The Heart of Dake

Day of Soreness and Rest

2012-01-25T20:14:00.000-08:00

Dake is pretty sore from all the attempts of draining his blood. The ladies who help with getting him up and dressed had to be extra careful with him this morning. He was able to go back to bed this morning and that definitely made him happy. After the travels and events rest was truly needed. He seems rested after the extra sleep and seems to be in good spirits despite the soreness. All is good.

Does Dake Really Have ANY Blood in his Body?

2012-01-24T12:00:00.000-08:00

Early this morning Dake woke up to a group of professionals all with needles. The cardiologist triedto draw blood on the inside of his wrist but no luctk. So he decided to go ahead and try the femur vein/artery in upper leg. No luck! The doctor dug but still no luck! Dake just said "Sweet Nibbets!"....Which honestly I could of thought of different words.
The doctor had Dake drink water most of the day. Dake said his eyeballs were floating......The cardiologist returned in the afternoon. He tried first in his arm and hand. No luck.....moved to his feet and leg....no luck....He decided to return to his femur artery/vein....Dake is not at all thrilled at this decision. David had to help hold and lift Dake and I was on the other side. David usually leaves the room on purpose because when anyone in his family has to have blood drawn or taken David usually lands up becoming the patient. I made him look the other direction.....his face still turned blood red..
.Finally blood has been found and drawn. SIGH!

First day of Testing @ Johns Hopkins

2012-01-23T16:39:00.000-08:00

The flight here was very smooth and we landed to the sight of
SNOW....which is always exciting for us.
Dake started out with a rough day as the head of IV and several nurses from all departments attempted to get blood from him. They finally made to his foot but still to no avail ...the blood remains in his body. But despite those failed efforts good news was around the corner. His grip strength had improved in October at the three month mark.and today revealed he had a strength increase even more in his grip at this six month mark......Baby STEPS BUT we will take IT! YES!!!! YAY!!!!
Last time at the first MRI Dake had great difficulty with the task of breathing and holding his breath and the added grills put on his body. At the beginning in July what took 2 1/2 hours should have taken about an hour. Today he completed his MRI in an hour and he did soooooo awesome with taking the test. We do not have the results yet but he was relieved to get the dreaded test behind him. I asked him what was diffeent this time and he said he just kept reciting the Lord's Prayer over and over again...He said he would forget where he was and start again.
Tomorrow the cardiologist will attempt go into Dake's main artery in his leg to get blood needed. This is extreme and must be performed by a cardiologist. After consulting with his cardiologist he suggested this is probably the best way not to make him a human pin cushion. So in the morning this will be performed....
Today the actually medicine was adminstered. and we will see.......

Fly to Baltimore ....EARLY Monday

2012-01-22T04:59:00.000-08:00

We will leave Athens early to travel to Baltimore, Johns Hopkins, on Monday morning. Please pray the travel will be comfortable for Dake and with lots of ease for David especially. Dake will be checked for his six months checkup. They will repeat the dreaded MRI (it took two hours last time) and several other test. This is the time in the trial that everyone will definitely be on the actually drug and not a placebo. (Dake and I believe he is already on the actually drug but that is just our belief at this point). Praying for awesome results on all his test and encouragement to continue forward with this drug.. Pray some of his daily living skills return with the hope of this drug..

2 Awesome Days......(knock on wood)

2012-01-21T17:44:00.000-08:00

Dake has had two wonderful days the last two days/ In the past 48 hours Dake has not had to have a breathing treatment which is the first time since right before Christmas. Celebration! Yay! Keep praying.

2012-01-17T20:29:00.001-08:00

Coming up on the 23rd of January ....SIX MONTHS.

2012-01-17T20:19:00.000-08:00

Dake will be returning to Baltimore MD at Johns Hopkins for his six months check up. This is a check up on being on the sildenafil or placebo. At this time all test will be repeated and then he will definitely be placed on the medication. No placebos will be administrated after six months..ALL patients for sure get the medicine. Dake and I both have a gut feeling he has been on the medicine all along but we are guessing at this point.
PLEASE pray for this trip and the results will be POSITIVE for Duchenne Muscular Dystrophy patients. Please pray for David and I as we wait with Dake and deal with the details. And please pray for Lyndsey and Gracey while they carry on with daily life and wait for the information to filter down to them. Thanks so much for your support.

Dake and his friends get a way for a weekend.

2012-01-17T19:56:00.000-08:00

Lyndsey and Dake and their friends, (Perry, Phillip, Evan, Miranda and Clint) headed to the beach for the Gulf Coast Getaway in Panama City Beach. It is a yearly thing on MLKing weekend. Dake looks forward to this trip all year long. It is a Christian retreat for young adults.
This year he was all ready to go but he had to put a hold on his plans. On Tuesday before they were to leave on Friday Dake had to go to his pulmonologist because he was having a cough making it hard for him to breath. He was having to do more breathing treatments to be comfortable and his cough was not getting better. He asked to go....(This never happens and usually begs me to hold off when I suggest going).Dake up to this point has not had any pulmonology issues. The doctor was definitely concerned and gave him a steroid shot immediately and ordered a chest xray. He also said if the xray was not clear he could not go. He had reservation about him going without a nurse or doctor traveling anyway. I told him about the people going and he agreed if the xray was OK he could go as long as he had responsible adults who know how to handle his situations accompanying him.
The next day we found out his xray was clear and he could go. He was so excited. He packed two days early. Plans were still own and now mom need to learn to breath. David and I were headed in a different direction with Gracey to a a gymnastic meet. I must admit I drove everyone crazy who had a phone checking on him. Everyone was nice and said it was fine but I know I was a nuance. This trip was hard on momma being away.
They had a wonderul time. He had to had treatments every night but everyone handle the situations beautifully. Wonderful friends are awesome.

Back To School and a Whirlwind of Activities for January

2012-01-05T21:37:00.000-08:00

      Gracey goes back to school tomorrow. I am never ready for my kids to go back to school. I love hanging out with them and enjoy time with them.
      This month will be busy for us. Dake and Lyndsey have Gulf Coast Getaway in Panama City. I usually go and take Gracey and drive our group. This year Gracey has a gymnastic meet in the opposite direction.(Gracey is not happy she has to miss GCG....me too.) I love going to hear Randy Harris. But the amazing singing is worth going to hear alone. Not to mention the experience of the ocean and beach during the off season. It feels like your own personal beach. Dake, Lyndsey, Phillip, Evan, and Miranda are for sure going and others are still pending. I know they will have an amazing time.
         I am a little worry about Dake and his breathing. This winter has definitely been different. He has had to have more breathing treatments in November and December of 2011 then all his treatments in the years past combined. Also our pulmonologist we have been going to for the past few years is moving to Arizona. I am happy for him but sad for us because I really wanted to have a "relationship" built with the pulmonologist before needing him or her on a regular basis.
   So far we have had only one scary situation with Dake and his breathing. Dake had a treatment right before bed. He then woke David up about 2 AM unable to get air in. He was scared and his eyes fully expressed it. We repeated his treatment. I knew if this did not work we would have to call an ambulance. Luckily it did work.....Thank God!
Before heading to GCG the group above will all be instructed on how to help with the breathing machine.
This is the first time I have felt the breathing machine should travel with him.

On My Mind.....

2012-01-04T09:13:00.000-08:00

January 4, 2012

The past few days my mind seems to continually be thinking and praying about a couple of children I do not even know. The children are Noah I have seen on Facebook the “Pray For Noah” entries and Eli William’s health was announced at church.

Not sure why my mind seems to drift back to these kids and their families other than I know the hurt the mommies are feeling. Honestly, I do not even know the details of the boy’s problems . I do know the desperation a parent feels when the doctors offer little or no hope. When medicine does not have the answers (and even if it does) God and prayer is ALWAYS there. And I do know sometimes when your heart hurts and you are overwhelmed you need others earnestly praying for you. To take over while you catch your breath.

Heavy on my mind is also Deb Ezell and her mother and family. (Her mom is on the conquering cancer journey. The cancer is very aggressive.)

Also just found out Noah Bowman had a lump removed from his neck yesterday and they are waiting on the biopsy results. This kind of waiting is so heart wrenching and hard.

…... So today, I am a prayer warrior for my son and these boys and their families. Please pray for Deb and family and Noah Bowman and his family too . Please join me” flood the lines” to God for these families.

Fever Finally Broke

2011-12-17T19:13:00.000-08:00

Dake's fever finally broke in the middle of the night last night. After sleeping in today he is beginning to feel much better. Thanks for all the nice thoughts and prayers from everyone. Hoping he does not over do it today.

Update on Dake

2011-12-15T14:36:00.000-08:00

We landed up at the doctor's office much against Dake's will. After a talk with his nurse, the doctor said he really wanted him to come in.
The doctor said without doing more extensive test he could not find anything on the surface wrong with him. His lungs sound good so that was a relief. He gave him an antibiotic and he wants us to pay close attention to his fever. Right now the fever is still around even with ibuprofen. He said if it does not break to bring him to the ER.
So now we wait.....
He did finally ate some chicken broth and is drinking some Gatorade.
Today certainly went differently than planned.

FLIP FLOP

2011-12-15T09:36:00.000-08:00

We had such a "high" yesterday with our encouraging news from the cardiologist. But not even 24 hours have passed and things have kinda flip flopped. Dake had to have two treatments back to back before bedtime last night. After the last one he seemed comfortable and went on to bed. David said he slept well until 4:00 (when David left for work). From 4 o'clock until 6:30 a.m. I was called continually by Dake for readjusting and movement.. He seemed to feel OK just uncomfortable.
When the ladies came to help with Dake's( around 7:15) bath and such I left to pick up some artwork. Before arriving at my destination, I got a phone call from one of the ladies telling me Dake was running a fever and his pulse was high. I made a U- turn and headed back. I called the doctor (pulmonologist) on the way home. He said if his fever got any higher to go on to the hospital.(worried about possibly turning into pneumonia) ( as I mentioned before the lungs and the heart are latter parts of this disease.) I returned home and now waiting on the home health nurse to follow up with Dake after the ladies had called.
Dake is now resting and I hoping things will flip flop back soon. There is nothing predictable about this disease. As we have seen in the last 24 hours things can change fast .Pray!

The Results of Today at the Cardiologist in Huntsville

2011-12-14T13:20:00.000-08:00

Dake and I returned after a long day at the doctor. Dake says,"they have waiting rooms to be able to go to another waiting room.". That about sums it up.
We went through the test required and waited for the doctor to enter the room. Dr. Laney came in and said ," Dake, you are holding own and we could possibly say you are alittle better........" Thank you God.WOO HOO! YAY!
As soon as the doctor left the room Dake said, 'Well, I think I am going to live forever!"
It has been a GOOD day!
Next hurdle is in January at Johns Hopkins with more intensive and aggressive testing....(Dake is really dreading it.) Please keep praying.

Returning to the Cardiologist in Huntsville

2011-12-14T06:22:00.000-08:00

Today Dake has his appointment with Dr. Laney (cardiologist) for his regular yearly check up. Last year is when we found had a strong decline in his heart function. This conclusion kinda caught us off guard because we had no idea the decline wash going on. Duchenne Muscular Dystrophy will progress and the heart and the lungs are the last muscles to deteriorate before death. So, as Dake told me as we came out of the cardiologist's office after receiving the discouraging news.."It is, what it is!
As we enter this day with a prayer and attitude of "It is, what it is!" I hope for a sign the experiment drug is working in our favor.

All This Talk About Prayer

2011-12-05T20:46:00.000-08:00

There has been an abundance amount of talk about prayer lately. . Most of what has been said I agree with but I feel a vital important part has been overlooked or ignored.

Just because a prayer is not answered the way one wishes doesn’t mean a prayer has not been answered. We need to always pray God’s Will- not our own. The best example of this is from Jesus in Matthew 26:39…

..Going a little farther, He fell with his face to the ground and prayed, "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will." (NIV)

Jesus fell to the ground and cried to God. Jesus cried and plead to His Father, If there was any other way for God’s will to be done then take this pain away. God said, “No” to Jesus - but He still answered Jesus’ prayer.

God sometimes says, “no” and sometimes He says, “wait.” This in no way means God hasn’t answered their prayers. I believe those who have been told, “no” by God or “to wait” by God and have managed to keep their faith actually have a different perspective of God that perhaps is not known among those haven’t been there.

Maybe that is what meant in

James 1:2; Consider it pure joy, my brothers, whenever you face trials of many kinds (NIV) and in

James 1:12; Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him. (NIV)

I don’t even pretend to have prayer all figured out. But I do know those who have had God say, “no” or “wait” can be discouraged when prayer is discussed and this important vita l side of prayer is left out. Many times those who have had such an answer are weary and tired and need encouragement. Many times the ‘evils’ of doubt can set in as impatience surfaces. Or the “why God” begins to echo in their heads. Hope could be absent. Prayer and encouragement is needed.

Matthew 17:20; He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."

I don’t think anyone who has been discussing the subject of prayer meant discouragement upon anyone but please consider this side of prayer.

I rejoice with those who have had their “yes” or the answer they had hoped for in His name. I praise His name! I rejoice in their happiness. Never would I want to take away this wonderful joy and hopefulness.

Isaiah 40:31… but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. NIV

Good bye Mr. Hobbs!

2011-12-02T13:01:00.000-08:00

      Today my mother, Lyndsey and I attend the funeral for Wayne Hobbs. Wayne was a coach to David in high school football. My high school principal and later became my boss. He was Dake and Lyndsey's high school principal. He was very good to us when Gracey came along and help me make accommodations for her to help me continue working. He was extremely good to Dake and saw he got what he needed while in school. He went to bat for me when theschool superintent and I were butting heads.
     Dake and Lyndsey's senior prom was at the Opryland Hotel. The kids rode to the prom on charter buses. The buses were not handicap accessible. So I was going to drive and take Dake and his date in our van. But this meant they were excluded from their friends. Mr. Hobbs arranged for Dake to have a limo and to take him and a few of his friends to follow behind the buses. It was an awesome memory and we appreciate all he did for him.
    At graduation Dake had always work toward walking to get his diploma. But when Dake wasn't able to walk and rolled in to get his diploma Mr. Hobbs hugged him and the crowd gave them a standing ovation that still brings me to tears to think about 8 years later. It was one of those priceless moments.
Our hearts are with his family during this difficult time and pray God wraps his loving arms around them. RIP

Thanksgiving pictures

2011-11-30T20:15:00.000-08:00

Thanksgiving has come and gone....2011

2011-11-30T19:56:00.000-08:00

Our Thanksgiving came and wonderful family came with it. Most of the family was able to come except for few who were missed dearly.
. My daughters and nieces and I strategically conquered "Black Friday"! We started at midnight and went on though till late morning on Friday.. We watched the sunrise from' Michaels' parking lot..( awesome) I loved spending mad crazy time with all the girls. Fun! You must only tackle Black Friday with a team....
Dake's little cousins enjoyed riding around on his foot pedal of his chair. Gracey use to ride all the time but seems to have outgrown it. Dake enjoyed Adelaide and Vivienne bringing back the fun. We played the old favorite games like 'Scrabble' and 'Apples to Apples'. These are a traditional ritual with our family. We added a new game (at least for us)...'Buzzword' mix. With the movies, conversations, games and eating, Dake held up fairly well with our family of night owls. After having a few breathing incidents that happened a few days before I was concern he would wear out faster.
      Dake had back to back breathing treatments just days before Thanksgiving. The Tuesday
    before the Thanksgiving Dake had a moment before bedtime he could not catch his breath.
    We gave him a breathing treatment with his nebulizer and he seemed to be relieved. He wanted
    to immediately go to bed because he had worked so had to breath well he had tired himself. He
    went on to bed and around 1:00 a.m. David came and got me and said Dake could not breathe.
    I could not get the medicine in the machine fast enough. Dake's eyes still haunt me. Thank God
    the treatment eased him and he was able to breath. He was ready to go back to bed as soon as
    he felt better. I must say going back to sleep was harder for David and me,

.

Crud

2011-11-02T12:39:00.000-07:00

It has been awhile since my last post. Life has been busy and been doing some soul searching. (Jury is still out on that one.)

      Today I toured where Lyndsey will be teaching at Drake State Tech. College. She will be in downtown Huntsville in the old Huntsville Times building. Huntsville is redoing several older buildings and restoring them. Very Urban Chic. Would love to have a studio down there. I am excited for her. She is going to do so awesome and her students are in for a treat. (I am a little bias of course). She starts Nov. 7th. She is so excited.
       I took Lyndsey and Dake out eat at Sam's and Greg's for lunch. We needed to celebrate Lyndsey's new start. Dake had started to cough a little. I thought I would get him a Coke to calm it down. He continued to cough and cough. Once our order came I ordered to go containers so we could get him home and get a breathing treatment going.
     After the treatment he seems better but tired from all the coughing. Hoping this is a short lived incident and not the start of something worse.

Fender Bender....AND....and....

2011-10-13T21:29:00.000-07:00

We started our journey to Johns Hopkins today. We flew out early and landed in Baltimore to discover the airlines managed to crack and chip the fiberglass body of Dake's wheelchair base. We brought it to the clerks attention and she said we had to go to baggage claim and file a claim at the baggage office. I knew we were on a limit time schedule but also knew it had to be filed immediately if we had hope of getting it fixed. We were able to get it filed fairly fast and we were told we would have to wait for the central office to call. (This code for it might get looked at but it might take a year.)

We had a little panic moment with the shuttle when the man told us they canceled the van for a handicap rider. We said no we made a reservation days prior to flying....He rechecked and found he had overlooked our reservation. Sigh! Whew! and all those relief sounds one makes.

We made our appointment and the doctor wanted Dake's weight. They have this special table that we lie Dake on and it weighs him lying down. Phillip put Dake on the table and the it registered Dake had a 22 lb weight deficit. Phillip and I looked at each other and we simultaneously looked at Dake and all laughed. The nurse insisted the reading was right. Phillip and I, who lifts Dake regularly, both said, "Uhhh...NO Way!" After weighing him again on the same scale and got the same reading we insisted it had to be wrong. Finally they took him to another scale and the result was he had lost 4.5 lbs....which sounded more like it. Dake said he liked the first result better but I was very proud of him with his 4.5 loss.
The doctors continued their evaluation. At the beginning of this study, 3 months ago all the test were done as a baseline. One test they perform is a hand grip test. The test is measured on a number scale with the highest number means more strength involved. Three months ago Dake's right hand grip test was 4.6 and today his right hand measured 5.8! His left hand 3 months ago measured 3.8 and today his left hand measured 5.0! The doctors were so pleased but it did not compare to the joy we all felt. This is showing a growth in strength after 3 months. Dake's strength difference is too small for us to see yet in our daily lives with but shows the future has amazing possibilities......We can not even begin to express the first hope we have had in years. Thank you God!
It has truly been an awesome day!!!!!

Get On Your Mark.....Get Set....Go!

2011-10-12T15:54:00.000-07:00

Tomorrow we get up early to start our whirlwind day. We will fly out of Huntsville at 7 ish in the morning....land in Baltimore around 9:45. Catch the shuttle (hoping they marked is to be a handicap van....little paranoid after our last adventure with the shuttle.....we have checked and double checked)and head to Kennedy Krieger Institute part of Johns Hopkins Hospital. Endure the appointment and and answer about a hundred questions on the study questionaire. Try to catch a bite to eat if there is time. If not we will ration our airplane peanuts or pretzels. Then back on the shuttle (different shuttle...this one is courtesy of Johns Hopkins) to the airport...reboard and head home...

Hoping it will be that simple. Phillip has been on the phone literally half the day trying to work out a transaction with the airlines. So at this point because of all the "boo boos" and confusion from Expedia I am hoping we have tickets to get on the plane tomorrow. I am beginning to think we might be allergic to airlines. CRAZY!

Please pray for a safe and prospers travel for us tomorrow. Pray they see some possible improvement for Dake.

Back to Baltimore

2011-10-10T06:21:00.000-07:00

This is a busy week for the family. On 13th marks three months for Dake in the Johns Hopkins study. We travel back to Baltimore for a checkup. We are flying in early on the 13th and have our appointment then jumping on the plane and heading back home. It will be a whirlwind but Dake sleeps better in his own bed so this is probably the best set up. Phillip is taking David's place this time. It will help David to be able to stay in work and give him a break. Phillip is so good to help us out. He is such a good friend to Dake and our family. He has wanted to go with him since he started but because of other obligations this is the first time he has been able to work it out.
Then Friday Lyndsey has a culinary function in Atlanta so she and I will head out for that adventure.
Please pray for our group with all the journeys that lie ahead.

Go Big Orange

2011-10-09T17:52:00.000-07:00

Our family and Phillip went to Knoxville this weekend. David's friend from work had given us two tickets to the Tennessee game against Georgia. David and I tailgated with his friends, took in the traditional pre game festivities and then to the game along with 100,000 other fans..
The kids head to Pigeon Forge to shop and have some fun together....it sounded like the crowds were high in their area too.
Prior to the game I decide to go buy David and myself some orange shirts here in Athens. Living in crimson country I knew I had a challenge ahead of me. after about an hour in Wal-Mart I found two shirts orange for us to wear. I was relieved to finally just find orange. Halloween was on my side but landed up with plain orange shirts to wear
When David got home I showed him the matching shirts and his first response was ,"That is not Tennessee Orange!!!! He thought it looked more like Texas orange. After my challenging hunt and frustrating journey in crimson country, I was not pleased with his response. I quicklly respond back we would be wearing these beautiful orange shirts or I would be exchanging them for that crimson color.......We wore the orange shirts.
(Even if they were orange with slight bit of red in them.)
We had a great time at the game. We were packed in like sardines and had beer spilled on us from the three out of place Georgia fans behind us. They were obviously over indulgent in their alcohol endeavors. So I guess the spilled beer on us was our contribution of helping him cut back...Yuck!
When we meet back up with the kids ....they wanted to know just how much fun we had had.

Dake did not sleep well. So we are glad to be back home.

Why so sleepy?

2011-09-29T20:41:00.000-07:00

    Wednesday,at 6:50 a..m.,  Dake had great difficulty waking up. His blood pressure was extremely low. (he usually has unusual low blood pressure in the mornings....Wednesday it was even lower for his normal).
   I had Lyndsey take Gracey to school just in case while he was getting a bath he decided to pass out.(which has happened before)
     I love taking Gracey to school for her to have some normalcy (whatever that is) for her but for me too. Dake had his bath but he acted almost like he was drugged. I double checked his meds and all of it was fine. In fact I had been trying to cut back on one of his "sleep" pills to see if getting up in the mornings would be alittle easier. He really did not want to get up but I insisted hoping his blood pressure would rise some. He did get up with the home health ladies and went on to get his bath. He did not shave which is highly usual for him....he is kinda OCD with his shaving. He wanted to go back to bed which I knew he needed to keep going but I really felt for him because it was obvious he was sleepy.
Of course it was one of those days we had a list and a half of things to be checked off for our daily routine...and this day was a day of leaving the house to get it accomplished. (This is an area I have a hard time with....I like to get on the 'ball" and get things done. Living with Dake has taught me things don't always goes as planned.... And more than likely don't have expectations because it will not go like you expect more times than not.) ( this where I tell myself to breath....just breath...) Just making a quick run to the store..... or whatever fits in the blank does not exsist at our house.
   I told him he could rest until 9:30 to 9:45 then I really had to get some of things done that were on a time line. He did ask for five more minutes which he always does....(but can't complain I am a "hit the snooze button" three times kinda gal).  Lyndsey and I got him up and got him refreshed. As we drove around town doing the routine errrands he wanted to stay in the van so he could sleep. Each time we stopped and returned to the van I would wake him up and he would immediately go back to sleep.I even sincerely told him I would sacrifice my feelings and slap him if it would help. I did manage to get a smile before he knodded off again.
   At 12 o'clock he had his Spanish class with my mom. I was getting concerned he was not going to stay awake to go....he was having great difficulty just keeping his eyes open. I kept calling his name as I was driving....I know it drove him crazy but I couldn't get him to wake up good. Class time came and I told my mom about his sleepiness and told her to call if he could not make it. He made it thru his class without calling us...He said he fought it at the beginning but finally seemed to wake up toward the middle.
Today, the sleepiness was not there.....wel,l at least not excessively....

Dake's Facebook post today

2011-09-26T17:33:00.000-07:00

Dake Weatherford
We often pray for Christ to cure us yet forget God uses own Illness to draw people to him.

As He past by, He saw a man blind from birth. And His disciples asked Him, Rabbi, who sinned, this man or his parents, that he would be born blind?" Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.
-John 9 1-3

Tanya Griffin, Ruth A. Smith, Eli Griffin and 19 others like this.

Justin Webster Well said!

Lynn Holman Weatherford love u.

Joseph Griffin I think about conversation between people standing in line waiting for admission to Heaven's Gate. "What did you do with your life?" "I was a Super Bowl champion". What did you do with your life?" "I was used by God to tell others about Christ" Keep drawing 'em Dake. Andy Finchum Missed you in class yesterday, my man!

Wendy Shelton Very well said Dake.

Hotdog????!!!!???

2011-09-19T06:53:00.000-07:00

Lyndsey is back home and she has made it her mission to ”whoop” us in shape. She is showing Dake how he can be more independent in little ways. She told him when he is at a restaurant to have the kitchen cut up his food so we do not have too. She told him it makes him more independent and he does not have to rely on anyone to stop eating to help him.

Yesterday we went to a local Mexican restaurant and Dake requested a smaller glass so it will be easier for him to drink. The drinks came out and he has an ex large glass like the rest of us. I suggested he ask for a “to go” cup. So he gets his “to go” cup and feels good about it. Lyndsey reminds him to ask the waitress to have his chimichanga cut into bite size pieces. So he did. The waitress brings Dake’s his food and it’s a child’s hotdog. The look on Dake’s face still makes me laugh today. We are all trying to remain calm and nonchalant but in reality we were about to blow milk out our noses. Lyndsey comes to his rescue and speaks a little Spanish to her and she finally comprehends. She then returns the correct order and cut up into bite size pieces.

David now calls Dake, “Hotdog”.

Advocate

2011-09-14T05:03:00.000-07:00

When you children go off to college or other adventure and return home things are always different, My oldest daughter returns home after being gone for three years and notices changes in the dynamic of our family. Changes to us that are subtle and gradual and we don't notice anymore.
For years David and I have been an advocate for Dake. (Not only with the Muscular Dystrophy but with his very challenge dyslexia, as well.) Lyndsey was always there, even as small child supporting and cheering for him and the family. She is pretty remarkable, even if she is mine.
The other day I got on the computer and noticed all these tabs open to different agencies to help with a variety of services. She told me that her Dad and I needed help and we should utilize any and all services. I said I thought we had and many times the answer is NO. She said that is not good enough. (She has red headed spirit!)
I never thought we needed an advocate.

Class in Session

2011-09-13T15:31:00.000-07:00

Dake and his grandmother, Galou, (my mom), started conversational Spanish on Tuesday. Today Galou came over so they could do their homework.....Dake is nervous he is not already speaking the language when he enters the class. Both of them seem to be having a good time....

Dake returns to his local Dr. tomorrow for his two month check up. Plans are set up for him to fly back to Baltimore for his three month check up.

Lyndsey bought 20 + plus chickens to prepare for the Wednesday night meal at church. I am sweating at the thought of her having to fix for 200 people. But she is totally fine. I would be sweating if I were fixing for 2 people, (those two people would be sweating too if they knew I was feeding them) . So I guess you figured out she did not get her culinary influence from me.

Planning Ahead

2011-09-08T04:08:00.000-07:00

Just booked the next flight to Baltimore which will mark the three month mark of when Dake started the study. This next trip will be in October. We will only have to be at Johns Hopkins for about an hour so we are going to fly up and return the same day. I hope this does not completely exhaust him. Phillip is think about going with us on this trip but it depends if he has a new job that will interfere or not. His help and company will be truly appreciated.
Nothing significant has been seen or felt by Dake so far.
We will continue to pray for what is best for him and God's guidance.
Of course. I would love that miracle.

Ironing???

2011-09-04T21:28:00.000-07:00

This morning while getting dressed and ready for church Phillip was helping us by finishing with Dake. So to help him I ran upstairs to iron Phillip's shirt for him. I turned the iron on so it would heat up and did a few finishing touches. We were hurry because we were running a little behind. (as usual). I quickly ironed Phillip's shirt grabbed it and ran downstairs as announcing we need to be in the car with the motor running. Phillip puts on his shirt and out the door we go.
We get to church with minutes and down to seconds to spare. We got Dake out of the back of the van and get him straightened and comfortable. (always have to allow time for straightening and time to get him comfortable...it is kinda a ritual now.) We finally make it in the building to find an end seat....up front, of course but we make it before the first note of the first song is sung! Yay! (miracle accomplished! WooHoo!) We all get positioned in our seats and sigh as if we catch our breath.
As the first song began, I glanced to see if everyone was in their place and set. Then I noticed Phillip's shirt. I got tickled to myself but at this point what could I do. I had ironed his shirt like I iron Dake's shirt. I am about to admit the short cuts I take in my everyday life here. I only iron the front parts of Dake's shirts because of his chair no one ever sees anymore of the shirt . So out of habit I had ironed Phillip's shirt the same way.
Poor guy and he was helping me and I THOUGHT I was helping him...
................................................................He did forgave me.....

If you could clone me......

2011-09-01T21:03:00.000-07:00

David returned to the doctor today and the doctor changed a medication. The doctor also received his blood work back and noticed he has a deficiency in a vitamin and he is now taking a supplement. So we wait for the new medication and the supplement to take affect and hopefully he will be a new man. (Just the same great guy is just fine with me)

Dake asked me the other day along with Phillip, Lyndsey,and Gracey, "If you could clone me and one of me was in the chair and one of me was walking which son would you want to be your son." I replied, "You would not be who you are if you were not in the chair. So if you looked identical on the outside and one was walking and one was in a chair...it would be impossible for you to be identical on the inside." He agreed...I said."You are not your chair but being in a chair has molded you to who you are today. I like him, he is a pretty awesome guy but I would love for you to be walking....more than anything. So if you could be the christian man you are out of the chair like you are in the chair I would pick for you to walk..........." I asked him the same question too. He said he did not know if he would be as faithful out of the chair........
We continued a great discussion with what would be different if he did not have the chair as part of his life but was a healthy walking young man. We talked about where he thought he would be in life and what he would be doing as a profession. It was a good conversation and everyone had an opinion of how his life would have been if......... It was good but bitter sweet.

God has blessed me with amazing children and I am thankful for them all.

Compliments ONLY!

2011-08-30T19:49:00.000-07:00

Great news, Pam gets to return home from hospital and for mending along with girls. Hoping they will be as good as new soon....Thank you God. The Schrimshers and Besheres have had way too many bumps this year with the tornado and this wreck. We are continuing to pray for their full recovery.
When I was five I had a wreck with my grandfather who lived in Memphis. (We lived in Columbia, Tn.) I remember he was so scared when he saw me because I was covered in blood. He got to ride in the ambulance with me and he told the ambulance driver not to put on the siren because he thought it would scare me. It took a long time to feel comfortable to ride in a car again. My head got hit hard and I had a bloody nose. I had a concussion and they were told to not let me sleep and bring me back to the hospital if I had any vomiting with blood. I remember having a bad headache and did not want to eat but my grandmother gave me HI-C. It tasted so good. Later I started vomiting and my grandparents thought I had thrown up blood but it was just the HI-C.
David's blood pressure is still elevated but better than it was. Within minutes of arriving home he was pulled over and given two traffic tickets. One for failing to use his turn signal and the other for light not working properly....This is not the best thing for someone with blood pressure issues. We could truly say lousy timing...
The doctor's office called and had to postpone David's appt. for Wednesday to Thursday. This is one time I do not want to be patient.
Luckily Phillip is visiting with us this week and he is taking the sleep issue for David right now. Phillip is amazing how he seems to show up in our life when we really need some help. We are not only thankful for his friendship with Dake but with the whole family....He is like family. Thanks Phillip.
Tomorrow Mom (me) has decided we can only say positive and loving things to each other. I noticed on Dake's facebook he had already paid a nice compliment to his red headed sister... I was so proud of him getting an early start...later I discovered she had written it instead of him.

Praying for Pam, Sarah Beth, and Kimberly Besheres

2011-08-29T19:04:00.000-07:00

We have heard Pam and Sarah Beth and Kimberly have been in a car accident. They have been taken to Huntsville Hospital...Please pray for this precious family.

Please remember David too...he is still struggling with high blood pressure....

Recent update from Bill Perkins: Update: Kimberly has been released. Sarah Beth bruised collar bone. Pam likely has a small fracture of sternum (seat-belt) still waiting on x-rays of right leg. Doc said "she is okay". Neck collar is off, she can get up if she can/wants to. Praise God!

Pray

2011-08-28T18:19:00.000-07:00

Just a quick note to ask for prayers for David and his elevated blood pressure. His bp spiked on Saturday and he having throbbing headaches and bp is still up. Please pray. Will write more later...sorry for the delay in postings.

Perception from Others

2011-08-21T17:12:00.000-07:00

       Have you ever wondered what others think of you? I think most of us are a little curious at times.
     It is interesting how some people will see someone in a wheelchair and comment as though they are not there or cannot hear them.
    One of my favorites perceptions of Dake was when he had his service dog, "LURCH" (huge great dane and lab mix ) with him and we went into Walmart and the person said to the person beside them "He must be blind".....OK..... think about it! Would he be driving a powerful machine if he were blind?....He did not have one hand on the ground and one on the joystick. You have to laugh because surely by the time that person got to the car they realized what they said.  (Personally, I would have loved to see that! ha ha) Surprisingly we heard that comment a couple of times. We actually do laugh. It is interesting to people watch.

   The other day Dake, Lyndsey and I went to a restaurant we frequent often. We ordered our drinks as usual and they brought them. The nice waiter brought Lyndsey and myself the large glasses as usual but he brought Dake a "kiddie cup" as Dake calls it. You know the cups with a lid and straw. I immediately thought how thoughtful the waiter was being sensitive to his needs. Dake on the other hand took it as an insult. Lyndsey laughed and teased him trying to make light of it. Then we all started laughing. It really upset him though and I understand what he was saying.
   I understood both views...The waiter thought he was being kind and he was but I undersood Dake being insulted by it. He felt like he was being perceived like a fragile person who could not help himself.
I knew Dake was feeling better about it today when he was sharing the story with a friend and was laughing about it.
Laughter is truly the best medicine.

One of my favorite t-shirts Dake had was....."Stare long enough and I might to a trick!"

Whose Watching Who? or is it Whom???

2011-08-18T17:45:00.000-07:00

     Today Dake rolled into the backyard and enjoyed the warm sun. (aka napped in the sun) Lyndsey was napping on the couch in the room next to the back door. I decided to spend some time painting and enjoy the time alone in the living room where my easel is temporarily set up. (living room is in the front of the house). Before putting the brush to my canvas I decided to get the mail. The heat hit me in the face as I ran across my yard to my mailbox. My dad was outside working in his yard. (Mom had taken a friend to lunch).I went ahead and got my mail and went over to talked to him about 3 yards away. I was concerned about the heat and him doing yard work out in it. We talked brief ( a little politics)  and I headed back knowing my brushes were waiting on me. I hurried in, cranked up the music and drifted off to my artistic zone of bliss. I was keeping an eye on my dad because the heat really concerned me.
      My dad is "Type A" personality. He never leaves a job unfinished. As a kid, we would work on a project and no matter how tired or late it was would always finish.   Not only would we finish but we would clean all the tools we had used before putting them in their assigned places. (This "type A' gene was not passed on to me unfortunately.)
      I was painting then I stopped and looked out my window near my easel but did not see my dad. I walked in another room to get a different view. I was worried he had passed out from the heat. I was distracted by the interruption of  Dake rolling in .... He was in a panic asking me why I did not hear him. Clueless I said, "What are you talking about? (assuming Lyndsey must have let him in.) Dake said, "I fell asleep and my arm slid off my armrest and I couldn't get it back up. (He could not get his arm up to the joystick.) I was screaming and yelling for you. I was stuck and could not move!."
       I apologized calming him down  and glanced in the den where Lyndsey was.....she was sound asleep. I asked him how he got inside? He said, "Pops heard me from across the street and he came to help me!" Then my focus jumped to my dad....Oh yeah! Dad!"
Oh .... Oh.... Oh...THAT was where he was!"
I ran from the back to the front to thank him.....(he was in the driveway)
Dake calmed down and Lyndsey said she never heard him.....she was about 3 yards away from him...zzzzzzzzzz......
All is well and everyone is fine......
My easel is still calling me......
........ perhaps another "quiet" time.....

A Good Day

2011-08-18T16:31:00.000-07:00

Today, we found out that the nuclear plant David works for is going to be reopened. He drives to Scottsboro everyday to Bellefonte Nuclear Plant. This is the plant that will be reopened and built. This is good news for our family and many others.

Also, Lyndsey was offered a part time job teaching Hospitality courses at Drake State Technical College in Huntsville. It has the potential of growing into more and she could have the opportunity to teach the overflow of culinary classes in the future. Drake State's culinary program is really growing so the position is a real potential.
So needless to say we are excited about all the good news today.

Pulmologist

2011-08-17T17:37:00.000-07:00

     Today Dake had his pulmonary visit. The doctor is very happy and impressed with Dake's pulmonary function from his evaluation today. He is waiting on the evaluations done at Johns Hopkins so he can compare the records with his but he is very please with what he saw with Dake's lungs today. And we will celebrate this moment. YAY!

     Gracey's first few days of school has gone well so far. She, for the most part leaves me in the morning smiling and gets back in the car smiling. So far the worst part of her day is the taste of her lunch...This morning I had a flash forward with her attitude. She could not get her hair to her liking and it was not a happy moment. I finally forced her in the car because of time and she at least came to a satisfaction with her locks before arriving to school. She did give me a sweet smile before hopping out the car.
      My experience tells me I will have plenty more mornings like this one echoing in my future. We are coming into that dreaded "stage" of adolescence. So we will just better hang on for the ride. This too will pass.

Local Doctor's Review

2011-08-16T11:10:00.000-07:00

    Dake went to his local doctor to have a one month check up and evaluation. There is little to tell at this point. He checked out fairly well with a concern with his blood pressure running low. We are to watch it and come back if it does not go up any.
    Tomorrow we go to the pulmologist and have a check up there.
    This is a rather boring update but I would rather have it like this then a dramatic one. I have had my share of those and will take the mundane boring ones anytime. Check back later for this docs detail. Hope they are boring too.

One Month Passed!

2011-08-14T20:41:00.000-07:00

Tomorrow Dake goes to the doctor locally for his first month's check up since he started the research program. We were able to work with Johns Hopkins to have a few of his check ups done locally so we did not have to fly to Baltimore every month. This will help us so much physically and financially. I have to remember to take all the paper work and info because Johns Hopkins covers all the charges even here at the local doctor. I tried to call ahead and let them know the situation with billing but that is like speaking a foreign language when I try to explain everything. So I am going in and try again face to face.....I know I can draw picture if needed.

The symptoms I want to check out most is his headaches and swelling of hands. Both symptoms are better but need to have them documented. And against Dake's wishes, I will feel better just having him checked out for those things. Dake would rather just skip that part and not mention it. But sorry Dake...Mom Rules on this one.
He has a pulmonologist appointment on Wednesday. This is going to be a busy week. School, Doctor, Gymnastic, etc.....Whirlwind....Crazy!

Graduation for Phillip

2011-08-13T07:20:00.000-07:00

Today is a very special day. Dake's best friend is graduating as a mechanical engineer from UAH. This graduation is extra, extra special. His like family but because he has had extra challenges along the way. His four years has taken him eight with his challenges and obstacles of life. We are so proud of him and how hard he has pushed and worked this last eight years.

Today we say
"CONGRATULATIONS"
to our

dear friend Phillip!
WE LOVE YOU
AND
ARE SO PROUD
OF YOU!

He has shown us and others not to let struggles and obstacles hinder you from striving and achieving your dreams and goals. Go Phillip!
See you at graduation!

Fifth Grade

2011-08-11T23:16:00.000-07:00

      Tonight was Gracey's fifth grade orientation. I cannot believe my baby is going to fifth grade. The fifth grade is a big year and she will begin by starting to go to a new school. She will have a locker and change classes for the first time. Lots of new and exciting stuff.
    My fifth grade year was one of my worst in my school career. My teacher lost her mother and husband both in that year . Children and grieving do not always mix.
    Fifth grade was a transitional time for Dake. It was when he got his first scooter. He always told us after his diagnosis that he would NEVER go to a wheelchair. As the time started to approach that some intervention of help with walking was needed I knew I needed  to give him permission or reassurance it was OK to go to a wheelchair. He had echoed the statement he would never have to use a wheelchair so much because he was constantly staying positive. But honestly I think he was trying to protect us by denying inevitable.
      In the fifth grade the time had dreadfully come. He needed some help walking long distances and maneuvering in the hallways. He could easily get knocked down if he was bumped by someone in the hall or classroom. He was not emotionally ready for a full wheelchair and honestly I was not either. (I hated
the first scooter... but relieved to have it at the same time.) We talked about how cool his new cart was and how fun it would be. He adjusted well and was relieved to have the stress of walking the halls lifted. Mrs. Tucker was an amazing teacher and she was very adjusting too. Luckily his best friend Phillip was in the same room that year. Phillip was fascinated by the mechanics of it all. They were planning to "soup" up his ride on a 10 year old level.
All in all Dake had a very successful happy fifth grade year.

Is He Or Is He NOT? That is the Question...

2011-08-10T06:19:00.000-07:00

Some have asked and I have continually asked myself...."Do you think Dake is actually on the drug or just the placebo?" Aug. 13th will mark a month of starting the medication. I wish the answer was so astronomically no one had to ask because he would do something like walk or do jumping jacks to answer that question. But unfortunately it does not work that way.
....But as I slip back to reality....honestly some days I think definitely he is on the drug and others I am certain he is not. He kinda feels the same way. Even Gracey was convinced he had lifted his drink higher than usual the other day....but Dake did not think so.... So I quess we are all on constant watch. That wonderful word of patience is in play....again...Isaiah 40:31

but they who wait for the LORD

shall renew their strength;

they shall mount up with wings like eagles;

they shall run and not be weary;

they shall walk and not faint.

I love visualizing riding on the wings of eagles in flight.... and Dake being that free.

Spanish

2011-08-08T17:31:00.000-07:00

Dake and his grandmother, GaLou have decided to take a conversational Spanish class through the continuing education at the Athens State location downtown. Today was the first day. Dake was a little nervous but excited. He was definitely curious. Mom called early this morning and said the instructor called and they are postponing the class until September. I told him today when he was half asleep but I think he was a little disappointed by the delay. GaLou was afraid the class was going to be canceled when they called today so we are glad it is still on.

Dake doesn't hear well phonically. He is dyslexic. Learning if not taught in his style can be quite difficult. He has never taken Spanish but has traveled twice to Mexico for mission trips. He loved interacting with the people especially the children. (and they loved him.) And, of course having a little sister from Guatemala the desire is enhanced to learn the language.
Going with his GaLou there is a guarantee they will have FUN!

Corn, Corn, Corn......

2011-08-07T18:58:00.000-07:00

       Today we ran it close to starting time to get to church this morning. We have all known of people who think they "own" their seat or place on a certain pew at church. It is not like that actually with us but it may appear like that to some. We have to find an end pew or seat to house our family and Dake on then end. We need an end seat next to Dake not only because it is nice to sit together but because he needs assistance with the communion and other things sometimes during church. This morning we were running it close to the wire and I begin to get a little panicky worrying we will not get a place where we can sit next to Dake. Luckily, I think we got the last spot and got settled in before service began. It so nice to have all my kids and Phillip with our family today. I gave me the warm fuzzes....you know one of those small things that just make you feel good.

     David's mom called and said the storm had blown one crop of corn down and we need to come as soon as we can to help with getting all this corn up. We left after lunch and headed to Tennessee to shuck and fix the corn. They had done enough already for David's mom and his sister and family. They had given away a bunch and were at the desperate point by the time we arrived. David and Phillip helped shucked the corn and Lyndsey, Gracey and I cut the corn off the cob and bagged it for freezing it. Dake started outside with the shuckers and moved inside and ate some of Mimi's hot fudge cake as he watched us cut corn.....his Aunt Bippy served him up right. (Something is not fair about him eating Mimi's hot fudge cake as we were working.......but no worries we did get ours when we finished.)
    Lyndsey grabbed her knife bag and we headed to Mimi's kitchen. When we all got in our place Lyndsey shared her knives with us for cutting the corn off the cob. She has a small fortune in her knives. I cut the corn off the first cob and I was in love. It was like butter sliding down the cob. Pretty awesome. As I was so proud of my progress I looked over and saw Lyndsey did about four cobs to my one. As my corn ego deflated I stopped to watch and WOW.   Watching her was like going to the Japanese Restaurant and watching the chef chop up your dinner for you but in corn form ....if you can visualize what I mean. She was very entertaining. Dake actually stopped eating a moment to watch too.
    We finally finished up with 25 beautiful quart bags of golden sweet corn. Mimi was pooped and relieved....... well until the next crop comes in.....

Air Condition is a Nice Thing!

2011-08-06T14:10:00.000-07:00

        With Lyndsey's move and the storm Wednesday night my post have been delayed. We lost electricity at midnight on Wednesday and it was finally restored today on Friday around 6:30 p.m. We were so fortunate during the April tornadoes with only a three hour outage that I couldn't help think of those who went weeks without power.
        There was no rhyme or reason to this power outage. It was so crazy our next door neighbors had power and two doors down had power but the rest of the street had nothing. I notice one neighbor next to us had an extension cord running across the street to help a neighbor probably with a freezer. Just a tiny glimpse of all the kindness, like during tornado times, was reflected in that cord crossing my street today....warmed my heart while remembering those tragic times filled with the window of awesome kindness among neighbors.
   Speaking of kindness.....Perry was so kind of turning over his house to us while waiting on the power to return.  Perry was out of town but invited us to use his house. So this afternoon when we finally decide the heat had about done us in and we decide to go over to his house. It was raining and we had finally gotten Dake in the house. We had to take the portable ramps cause of a few steps. David had just sat down to rest and the my cell phone rang. Mom called to announce the power was back. Yay! Gracey said," If that is all it took for it to come back on we should have come over earlier."
      As I writing. this...two hours after the return of power ...we hear a POP and we are now again without power....uggggggh.
    Here we are sitting in the dark again......sigh I am literally typing on the remainer of my battery juice.
     Dake's whole life revolves around electricity....he has not had a shower since Wednesday....we are not sure if it is him we are smelling or spoiled food. He can not tolerate the cold water.   He is on his computer most of the day or watch a movie but the most challenge part is his chair is electric. So no power + Dake = frustration.
      Tomorrow we had plans to take him to the church to bathe him. The church has showers that might work. It has to have enough room for three atleast. Right now it looks like those plans are currently back on. (That is, if I do not put him out in the rain because he so grumpy.) (His new grumpiness is because of the new power outage ....he is not a happy camper.)
      Phillip has just arrived to visit with Dake and Lyndsey. He comes in with a smile and flashlight. His trailer had been damaged by a fallen tree and he had his very last final exam before graduation. So he doesn't care about our conditions as long as he doesn't have to worry about school.. So all is good!
   So playing cards by candlelight is on again tonight.....Time 8:35.........several games of cards have been played........
    TICK TOCK.........TICK TOCK
Time 11:42 p.m. Heading to Perry's house again.....Good thing Perry is not there or he might not answer this time.
   Ahhhhhh! back in the nice coolness. Perry's house is cleaner than mine we might just stay.
    This is so crazy.
    Now the food we were able salvage from the first outage is probably not going to make it for a second round.
    At least Dake is happier now (he is watching American Pickers)..... but we just discovered we forgot his :"Ernie"......OOPS!

The second outage last 14 hours.......we are now back home trying to clean up the damages....ugggh.

Packing.....

2011-07-29T12:05:00.000-07:00

      Gracey and I made it to Houston safe and sound. We are thick in the moving stress but so enjoying our time together. Lyndsey took her final on Thursday morning.   We were up so late the night before with her finishing work paperwork, me packing and Gracey running all through the apartment with "Basil", Lyndsey's cat.
     Lyndsey has to take a written final and a practical final. She took the written final on Thursday. She past with amazing flying colors. I am so proud of her. She takes her practical exam in Austin, Texas in August on the 20th.
    I have called regularly to check on Dake. He is having fun with Eli Griffin coming and visiting him. He has really enjoyed meeting and getting to know him better. Thanks Eli for taking the time to spend some time out of your schedule to visit. Will Grice and Eli took him out to eat yesterday. Will is nice to Dake out to eat every now and then. It helps a mom who is out of reach for awhile. Mimi and GaLou have been busy with vegetables Mimi has brought in from her abundant garden. They were doing "Rattlesnake" green be ans last I heard.
    David is coaching and helping me get through some of the bumpy stuff of moving. So unfortunately he probably has had the worst job of all. Thanks for the help and love you for dealing with the "stressful" me.
    Today is Lyndsey's last day of work. Wow. I hope it is a good farewell for her. I have meet some of her wonderful friends and they are all so sweet to her as she finishes her final days here in Houston. (This does a mom good too.)
Lyndsey's apartment is adorable. She had it decorated with discount and yard sale specials but you would never know with its dazzling pizazz. It is too cute. I have done most of the packing because she is finishing her apprenticeship items and working. I have been amazed how organized and how she has a minimalist approach to life. I know she is my daughter but she is pretty awesome. She definitely has a little of her dad in her and a little of her mom mixed with her own principals added.
     Lyndsey has a pool outside her apartment door. This pool has been calling Gracey's name since we arrived. I promise her I would take her when we go do the laundry because they are side by side. She is trying to patiently wait until I finish here. So I will finish and take her to the pool and experience the joys (again) of washing clothes at the laundry mat. Lyndsey told me that was going to be her first purchase when she gets a job.

Early To Bed....Early To Rise...

2011-07-26T20:36:00.000-07:00

    One out of two ain't bad.
   Tomorrow morning Gracey and I will leave Athens and head to Houston. We will leave our house about 4:30 a.m. and drive to Nashville with a lay over in Memphis and then on to Houston. Lyndsey has nice agenda planned for a girl's long weekend out. ( I hope we have time to pack her.) We are excited to meet some of the people she works with and to see her apartment. It's bad that we are just now able to see her apartment the same weekend she is moving out of it.
      We have not traveled by van in the last year because Dake was having trouble traveling that far. So to simplify things we would fly Lyndsey here for special times together. This is why we have not seen her place for the last year.
     I think I have all my ducks in a row for Dake. Mimi and GaLou (grandmothers) have graciously agreed to stay and help with Dake. Neither one nor should they lift Dake so Eli has agreed to be on call for them in case he needs to be lifted after the home health ladies leave in the morning. David works in Scottboro now and is an hour and a half away. If Dake needed to be lifted for some reason he could not get to him immediately.  Thanks so much Eli this makes leaving so much easier.
    I have his meds separated and labeled for Dake. He has three doses a day. I got the emergency numbers posted on the cabinet door. All the home health ladies are on ready. Thursday we will be minus one girl but it is taken care of and should not be a burden on the grandmothers. All his clothes have been washed and dried. I know am forgetting something but hopefully everything will work out just fine.
     Dake had something happen today that has never had happen before. His hands were swollen and puffy. Not sure what caused this and he instructed me not to worry. His grandmothers instructed him he had to behave and not get sick while I was away. It could be the heat, maybe or the new medicine for the study....not sure but will definitely be watching it. He has had a headache the last two days as well.
         It is nice of him to make me worry right before I leave. haha.
He told me not worry but he did ask me in private later if I thought it was OK. I jokingly said, "You are not to worry." in the same way he told me.
Lyndsey will come home to continue her new job search. We have several in our family who have finished college and started the hunt. Hoping they all find there dream jobs soon.
Must go to bed now!

Faux pas

2011-07-24T17:04:00.000-07:00

Today, I committed an horrible faux pas. It was truly appalling. But it happened. It was totally an accident. It was luckily only noticed by one person...... I think. Thankfully that person was my husband. David and I teach the fifth and sixth grade at church. The curriculum this quarter is science based. It basically is showing Christianity vs evolution. Today's lesson it was talking about "organisms" and I totally whole heartedly pronounced it wrong .( just remove the n and i) David about choked and as soon as I said it out loud I hyperventalated but quickly corrected myself...I believe it was over their heads but YIKES.....sometimes I just need to stay home. David hasn't let me live it down...

....So sorry if your child is in our class. But no one reacted and my own child did not comment so I am sure it flew over their heads.
Gotta laugh so I don't cry.

Saturdays-----AND HAPPY BIRTHDAY LYNDSEY!

2011-07-23T13:59:00.000-07:00

HAPPY BIRTHDAY TO MY LITTLE RED HEAD....

.LOVE YOU LYNDSEY..

...WISH I WAS WITH YOU TODAY....BUT WILL SEE YOU 4 DAYS...YAY!

        Saturdays are the best. It is the only day each week we do not have anyone come in our house at 7 am or before that is not kin to me or personally invited.
     I appreciate the help with Dake during the week and never want to indicate I do not .But Saturdays make me feel like we are just an normal ordinary familly. I can sleep a little later without thinking it is time for someone to enter the house. I guess it its the privacy issue too. Dake's helpers enter as the arrive to our house. I had set it up this way because sometimes in the school mornings I am busy helping Gracey get ready and it interferes with me getting her ready on time if I stop and answer the door each time they arrive.
     Anyway David took Gracey out for their regular Saturday morning "date" to Buger King for breakfast. David takes this time to have some one on one with Gracey each Saturday and lets me sleep a little late...(.He is so sweet.) (He has done this since she was five years old.)
      This morning soon after they left Dake called to be turned from his bedroom downstairs. As I came down my stairs to go to Dake's room someone knocked on the front door. Luckily I had put my clothes on because my nephew and niece had spent the night and I did not want any embarrassment with half clothed bodies....I went to the door and I could barely move (David and I built a new fence yesterday) because I was sore and stiff (and old). I have the" sleep in" contacts in my eyes and because Dake called I did not stop to put drops in my eyes so I will blinking constantly trying to lubricate my eyes enough to see. So I answer the door and it is two sweet people trying to
"sell Jesus" to me. I am sure one look at me with my unbrushed hair, stiff stammering moves and my blinking eyes they probably thought she really looked like a soul who was lost. I explained where I attend church and sent them on they way. (Sure would have loved to hear what they said after they left me....hahha!)
           Dake called again and after finishing getting him adjusted there was another knock on the door.....oh well, not a relaxing Saturday this time.......

"Life is too short to be sad."

2011-07-19T06:33:00.000-07:00

Been in a big funk the past few days and now it is time to SNAP out of it......Dake's quote from a long time ago was "Life is too short to be sad." So forward we will go.

Lyndsey finishes up her three year apprenticeship at the Houston Country Club under the skills of master chefs, executive chefs and sous chefs. We are so excited. She will come home to Athens and catch her breath and begin her journey of job hunting. Her first ambition is to teach and teach at a competition level with ACF (American Culinary Federation) qualifications She hopes to be closer to family and we definitely do too.. So it begins....I am excited for her new chapter and especially getting to see her a little more.
Gracey has been counting the days since she left. She left when Gracey was in the second grade and she knew she wouldn return when she started fifth grade...this fall she starts the fifth grade and Lyndsey comes home. Gracey is beyond excited.

Dake said "Oh No! Now I will have two sister telling me what to do!"

Gracey and I will fly out next week and get her packed and bring her home....YAY!

2011-07-18T10:12:00.000-07:00

"Sometimes God allows what He hates to accomplish what He loves."
— Max Lucado

Isaiah 65:24

2011-07-15T19:38:00.001-07:00

Before they call, I will answer; and while they are still speaking, I will hear" (Isaiah 65:24).

"Before you even utter a word," God promises, "I'm involved in answering. In fact, while you're speaking, I'm involved in bringing to pass the very thing I have planned from the get go."

HATRED

2011-07-15T08:41:00.000-07:00

You know I am going to just tell you straight up, I HATE this disease. It has robbed my child of his strength, quality of life and dignity. I have watched with diligence for almost 21 years of his life. I have watched as the life has been drained out of his spirit. I've watched the frustration of this disease steal his stature and ability to become the man he desires to be. Knowing that there is not a dang thing I can do about it makes the hatred of this disease grow stronger. The strong feelings of hate for this disease can come out of anywhere and at anytime.

     Yesterday we had a long wait at the airport in Baltimore. We were in the family restroom all together and it hit.....We had a meltdown.....Yelling, anger, fear and tears filled this little room in a public area. (Hopefully no one was waiting.) My heart still hurts today as I remember Dake plea desires to be independent and to be a man. A man with an independent life. It breaks my heart I cannot give him that. As a parent, we are suppose to teach our children independence and then one day give them it. It is one of the best gifts of all and to let them fly.

     On Wednesday night, Dake stayed alone in the hospital. "They" highly recommended the parents not stay....as David pushed me in the cab, both our hearts were reluctant. This is the first time EVER Dake stayed away from us without someone he knew personally to help him. (on of the hardest things I have ever done). Before we left I was trying to explain to the staff he was not able to turn over and he would have to be turned regularly in the night. The nurse nonchalantly said, "Not a problem all he has to do is push the button and we will be here." Sounds simply right?   Not for a Duchenne patient who #1 cannot reach to get the button and #2 then push it. Finally the research coordinator understood and had maintenance replace the call button with a "soft touch" button. You could almost breath hard and set this button off. (This made leaving a little better. Not much but alittle.)I placed the button where he could easily touch it and David and I positioned him in his favorite pose and we left. I kissed Dake goodbye and he told me not to cry.....he was calmer about it than I thought he would be.

Early the next morning we arrived in the hospital and Dake was in an awkward position for him. I greeting him cheerfully and said, "Hey, we all survived!" I asked him how it was last night and he said he did OK until early morning and he could not find the button. I said but I left it right here to help you. One of the nurses who took his vitals moved it during the night thinking he just had to roll to touch it and call. I asked him, "What did you do?" He said he yelled for a nurse until the lady next door pushed her call button to get help for him. (my stomach did a flip flop....ugggh.)   Within thirty minutes David and I were worn out adjusting and arranging him to a comfortable position. He was almost in a panic, he was in constant need of us all day.

I do not know if this was what triggered the moment in the restroom at the airport or not. But I think reality kinda showed him (even though he knows)independence may not be plausible.

I am not sure but it hurts either way.

Picture at Johns Hopkins July 13, 2011

2011-07-13T12:15:00.000-07:00

Dr. Leung performing a pulmonary function test on Dake....

.Looks like Dake

might have smelled something bad....lol

Dake is with Dr. Genila Bibat, the research coordinator for the research team.

Rodney Cobb doing an ultra sound

on the artery on Dake's arm.

Hardest part is Dake staying

completely still for five minutes...

this was not at all invasive.....Yay!

Dake says this is getting a waxing done of his belly..

He told Rodney to be gentle. "RIP"

Waiting....lots and lots of waiting.....

At least he gets to wait while resting this time...".Nighty Night Daker!"

Started the Day with TESTS!

2011-07-13T11:31:00.000-07:00

Dake arrived early to Johns Hopkins. He started the day off with tests. His first test was a pulmonary test called a Forced Vital capacity...It is when he blows with force in this instrument to check how his lungs are working. Then he did the Pincher and Grip Test. This test measures his muscle strength in his hands and arms ...then an all over physical was done as well as an all over muscle assessment. . At 9 o' clockish he went to get a Flow Mediated Vasodilation (FMD) ...this test is an ultra sound of the main artery in his left arm going to his heart. They are checking the dialation and flow of blood in this artery.. Then the ever famous urine test was done. Following the above test the neurologist had a CT of his abdomen to check for fluid on his stomach. This is not part of the research but the neurologist thinks his stomach maybe collecting fluid and she is checking to make sure . David said the only thing they would find would be "hamburgers" in his stomach....

The cardiologist came in a discussed what was ahead and what he has seen so far.

We answered a several page questionaire about his daily life. He finally was able to eat at 2:00 pm today....He was more than ready.

The very first pill was given to Dake at 2:00 pm.......It has begun.......!

Dr. Leung who is doing her fellowship in neurology came in about 30 minutes after he took his first medication and ask how he was feeling..???? Dake replied, seriously, "I believe I can get up and WALK!" He said, "It works, it works!" She does not know Dake's sense of humor....Her expression was priceless.....She finally realized he was teasing and laughed. It was too funny.

Now we have more waiting to make sure everything goes well.

We finally Made it to Baltimore

2011-07-13T08:22:00.000-07:00

We left Huntsville in a crazy rain storm. When we took off as the rain was pouring down and lighting was in the distance. Soon we were in the middle of the clouds then in the middle of our air time we climbed up above the clouds and the sky was so amazing... the beauty of the sky was awesome. The sun highlighted the clouds and it made you feel like you touched a piece of heaven.....

Getting on the plane went well and not any trouble. The beautiful sky gave me lots of hope all was going to go well. Then we landed.........Dake told us prior to landing he had a major" wedgie'. We could not help him until we landed without looking like we were molesting him. We couldn't get up and move him because we had to stay in our seats most of the way because of the storm and turberlance. The warning signs turned off and we were finally able to relieve him . We landed. Everyone emptied off the plane and we patiently waited for the exiting aisle chair to arrive. We waited and waited and waited...the time for our handicap shuttle (which I triple reminded them to have a handicap accessible vehicle because of our last trip)to pick us up came and went and we waited and waited. Let's just say this is the part where the "straw broke the camel's back." The good news is David got to spend the night with Dake and I in the hotel. The bad news is David almost had to spend the night in jail. Surely, we are not the only people who ever traveled with a motorized wheelchair but from the reaction of the airlines you would think so.

We finally made it to the hotel....all three of us. It was around 9:30 pm and we were starving....we had not eaten since breakfast. I found this four star hotel online in package deal with the airline tickets cheaper than a 2 star hotel. The hotel is historical and gorgeous. The man at the front desk told us the restaurant would be open until 10:00 pm. This gave us about 30 minutes to get in our room and back down to the restaurant. When we got to this beautiful restaurant, the waiter was friendly and went to seat us. I was leading our group to the seat the waiter had appointed for us. He gave us wonderful table overlooking the entrance. On the way to our table, I saw a little mouse scurry across the floor right by our table. (ok....beside the fact, we were in an eating establishment and we saw a mouse ......mice are my least favorite things on the earth. Ok, honestly, I am kinda scared of the furry things uggggh)....We told the waiter and he laughed and said yeah I saw it too......NOT GOOD!
( But I did not scream at least....)

Tomorrow is a new day.....right?

Today We Take Off to Baltimore

2011-07-12T05:15:00.000-07:00

We leave for Baltimore today. Got everything pretty much ready to go and trying to get details for Gracey settled. Hopefully we will get there and settle down for the night. The day will start early tomorrow. David is not feeling well so it will be harder all around since he can not really take a moment to recoup. He is having headaches lately....we checked his blood pressure and it was elevated just slightly so we a keeping an eye on it. David does not usually get sick but definitely does not have headaches. The heat could be a factor possibly. Being a caregiver you do not have time to be sick or feel bad. The show must go on. Pray he feels better.

Dake goes and gets his medication starting tomorrow. He will either get the actually medicine or a placebo. We will not know and even the doctors will not know, only the computer. After six months and lots of evaluations and test we will know if he had the actual drug or not. I pray that the best for Dake happens whatever that is.

Last Minute Details for Trip To Baltimore

2011-07-11T06:50:00.000-07:00

Trying to finish the last minute kinda stuff. I did triple check the shuttle because of the problems last time. Dake does not seem nervous but does not look forward to the physical trip. He dreads the ups and downs of traveling in a wheelchair. But some things are not avoidable. So we leave, Tuesday, July 12 in the evening out of Huntsville. Gracey is staying with grandparents again and my nephew will be there too so she will have plenty of "picking on" to do....poor Nick! Nick has agreed to teach Gracey his soccer skills while we are gone. So they will be busy.

A Day at the Creek

2011-07-09T18:40:00.000-07:00

Today we meet family in Minor Hill at Mt Zion at the creek. It was an absolute perfect day for a picnic and playing in the creek. This spot on earth is such a unique place. It is pure and simple. Today, in the age of technology, it is refreshing to see nature entertain young and old in it's pure simplicity. (by the way, no cell phone service in this area)

Every year we frequent this same place out in the "boonies" and every year we get lost getting there. It is so far out that the pavement turns to gravel and soon turns to dirt before arrival. Some streets have names others don't. Every year I vow to take a can of spray paint to mark the way. This year there were pink balloons marking our path. We assumed that someone in our group had a similar idea of marking the way and graciously helped us. When we finally arrived we discovered a little girl was celebrating her birthday at the pavillon by the old church. We are just glad it lead us to the right place. This place is so tucked in the woods that not only do we get lost each year going to the creek we seem to get lost coming back out....

The rain caused the creek to swell and brought more fun for the kids (old and young) as they played in the natural water slide.

We all had an amazing time. I have to admit with all the fun and sun my mind occasionally drifted to the events ahead for next week. We leave on the 12th of July to return to Baltimore for Dake to start his treatment. I found my mind wandering in apprehension of the week to come. As quick as my stomach would do a flip flop from the thoughts of Baltimore, I would get splashed from giggling kids back to reality. It was a good day.

Dake and Nick

2011-07-09T07:53:00.000-07:00

Dake and Nick being "Dake and Nick"!

Family time and Visiting...

2011-07-08T06:56:00.000-07:00

Nick, Dake's first cousin, from Savannah, Georgia is here visiting for a few days. They have hibernated in their own world with technology and have enjoyed each other. Every now and then Gracey will join the mix. I will hear them occasionally laughing at some funny youtube they have discovered.

Yesterday, we got out of the house and went shopping at Bridge Street Outdoor Mall. The day looked perfect weather wise then we came out of one store and it was pouring down rain. Luckily we had some umbrellas in the car. Dake is usually miserable if he gets wet but his electric wheelchair does not mix with the rain at all. The sun played peek a boo and we were able to enjoy our day. We did make a mistake of going into the Mac store. Dake has been wanting a Mac for three years.....but now our Christmas list has already grown....very cool place.

Today we will go to Mimi's (David's Mom) house in Tennessee. We have family from Cincinnati coming to visit and spend a few days. We will see the new addition to the family for the first time, Lucas, he is child number 7 in his immediate family. We are a excited as always to see everyone and play with the new baby.

This month is full with travel. On the 12th we will return to Baltimore for Dake to start the medication for the treatment of the heart. Then on the 27th, Gracey and I are flying to Houston to move Lyndsey here after her 3 year apprenticeship under a master chefs at the Houston Country Club. We are excited to have her closer. The job hunt is on....still waiting on the instructor job in Tuscaloosa. Mrs. Weatherford and my mom will hold down the fort here with Dake. I am concerned if there is a situation that Dake will need to be lifted in the day hours because David is an hour and a half away during the day. Phillip is interning at Browns Ferry but does not have transporation and he does not drive. Pray no needs to lift him will come up during this time. It is an unperdictable situation for sure.

What a Great Fourth of July Weekend

2011-07-05T07:05:00.000-07:00

We are back home from the mountains. We had a blast spending time with family and friends. We did not take Dake tubing or rafting because the water was low in the mountains which would have been more difficult for him to make it over certain areas.

We stayed at the Yearwood Cottage, the family cottage. My grandmother was a Yearwood. Her sister owned the cottage and after her death, my great uncle, the only living sibling of my grandmother's family owns it. Uncle Al is so generous and shares with everyone. It is always such a wonderful time to go. The mountains are always awesome but the fact we have a place to go that we KNOW will work for Dake just adds to the enjoyment for Dake and us. No anticipating obstacles that will cause frustration for us. It is truly a place we can relax and we are so appreciative of Uncle Al's generosity.

Dake was able to climb Laurel Falls Mountain in his chair because it had a paved trail. Dake is terribly afraid of heights so this was a mission of conquering fear for him. He did awesome! We had several pass us on the way up and down but that is OK....he DID it. He is fortunate to have friends and family to be patience with him as he accomplished this feat. I think he was pretty proud of himself too.

He wanted to eat pancakes and we ate at the Smoky Mountain Pancake House on Saturday in Pigeon Forge. He was able to well fulfil this mission. They were so delicious.

We attended the first 4th of July parade at midnight on July 3rd in Gatlinburg. Dake got tired (as well as all of us waiting for the parade to start) but he enjoyed it. It was kinda exciting having a parade at midnight. Daisy Duke was the Grand Marshall of the parade. I believe all the male attendants of our group enjoyed seeing her.....I think the memory of her youth days were quite the highlights for some of them.

Everyone got to put one thing on the "wish list" to do during the weekend. Gracey wanted us to have an Old Fashion Photo taken of everyone. Her choices were to be "hillbillies", a "saloon scene" or "gangsters". She did not think the hillbillies had very fashionable costumes and I highly discouraged the saloon scene, so we went with the gangsters.....(I am not so sure I won out either way. Let's just say wearing fish nets in public was not my idea of relaxing in the mountains......) We landed up with a funny memorable picture.

All in all we were able to accomplish many fun thing, as well as relaxing things with our friends. We are very thankful for the moments away. Pictures to come soon.

Am I Crazy or What?

2011-06-30T19:01:00.000-07:00

About a year ago we bought a new doorbell system....one of those you do not have to wire...just put the batteries in and go. It worked great for a few months. One day the doorbell rang, Dake announced someone was at the door, (so I knew I wasn't just hearing things_).. I went to door but no one was there. The same scenario repeated itself at least three more times, I could not figure it out. One the fourth time, I noticed a UPS man was delivering a package across the street to my parents. I watched as the delivery man ran the doorbell at my mom and dad's house. As he ran their doorbell my doorbell echoed his motion. Eureka! My doorbell only works when someone rings the doorbell across the street at my parents house! When you ring the doorbell at my house......NOTHING! (of course, I could be ringing some strangers doorbell for all I know.) So if you come to visit you have to cross the street to push the doorbell button at my mom and dad's and I will come to my door across the street at my house...hahaha...
.I have dissected and examined the doorbells...I know the frequencies are mixed up but I cannot figure out how to fix the situtaton....If you have any suggestions please reply...CRAZY! Do do do do do do do do!

An Adventure....Maybe?

2011-06-29T16:16:00.000-07:00

This weekend we are headed to the mountains for an adventure....well maybe. We are planning to take Dake tubing or rafting. Dake is not real sure he is up for this after thinking about it. He has no core strength and this makes him nervous. So I recruited lots of friends and muscles. Phillip and Evan Webster and possibly Perry Scott may go and help with the adventure at hand. Dake thinks rafting will be easier on him because he can have someone beside him on both sides and in front and back of him. I, on the other hand think rafting will be rougher. So when we get there we will explore both avenues....and may decide to do something totally different.
We are planning on staying at our Aunt Skipper cottage in the Smokies. When she passed away my Uncle Al inherited it and he shares it will the whole family....it is a wonderful place and Dake can get around great. We do not have to anticipate any bobbles in our accommodations when we go....that is worth so much....especially if you have these obstacles when traveling.....Thanks so much Uncle Al.

A Blast From The Past

2011-06-26T19:31:00.000-07:00

We heard from someone in our past yesterday. We got a comment on the blog from a wonderful young man who made an amazing sacrifice for Dake and our family at a young age. Shane Basham at age 14 took a brave step to help someone else.

In 1992, Dake was one of 30 boys to join a research group for Myoblast Transfer. ( a muscle transfer). The best candidate for a donor is a family male member between the ages 10 to 18. We thought we had a candiate with David's second cousin, Bobby Edde. He went through the painful process of becoming a donor before he was eliminated. We still consider him an honorary donor for his sacrifice and willingness to go through the pain to help. We had exhausted all the males in the family and we had no match. Our first donor went to college with my cousin, Chris Harris at Freed Hardeman University in Hendersonvile Tennessee. Christopher Calendine was a senior and friend of my cousin. My cousin had told our story. Although Christopher was a little out of the age range he was still able to donate his muscle tissue because he was faithful with his physical fitness. Today, Dake is thankful to carry part of Christopher's muscle tissue with him. Today Christopher Calendine is a pediatrician in Rogersville, Tn.
Shane Basham was a volunteer for the second part of the research. He went in at the young age of 14 and went through the painful process of donating muscle tissue for Dake. Unfortunately we did not get to use Shane's donation because of the disaster of the research doctor's actions. We pulled out. The doctor soon after left the country.

We are so thankful and in awe of these young men to make such an unselfish sacrifice to Dake and our family. We will forever be grateful for their willingness to take on this challenge.

We are so thankful God has put such amazing men in the path of our lives.

BAKE for DAKE Cookbooks vol. 1 and 2

2011-06-24T14:47:00.000-07:00

       Becky Bowman told me the she found a copy of the first Bake for Dake cookbook while going through her grandmother'sthings after her funeral. It has been awhile since I had thought about either of these two editions of the cookbook. The first one was put together soon after Dake was diagnosed. Lyndsey helped as much as the adults going thru all the recipes collected. Betty Johnson, in Decatur, from Austinville Church of Christ was our optimistic cheerleader and promoted the cookbook among all she knew...she knows everybody. ( Betty is a dear lady who will forever be special in our hearts. She was even a helper to Dake in school in third and fourth grade. No baby in the nursery at church could refuse her famous rocking method until they were asleep or under her "spell" of contentment )

The research program Dake was in at age 9 turned out to be a nightmare in motion and financially. Thankfully we found out enough information and pulled Dake out of the program before harm came to him. When you participate in research the enrollment is suppose to be free. Dake was one of 30 boys in the world to join the Myoblast Transfer research. The phase he participated in was the to phase to be injected over 200 injections from the was down to reverse the disease. (or so we were promised.) We were promised alot....... not' bore you to death', I will spare you some of the nightmare.

Long story short .....the doctor said to continue in this " promising" research each family had to put $100,000.00 on the table. We were only about $100,000.00 short. So numerous fund raisers were launched on Dake's behalf. Kim Bennett started "Loaves of Love" and sold hundreds of loaves of homemade sour dough bread.....Thanks so much Kim for all your hard work. We had a giant yard sale for a month and the whole congregation at Austinville donated items for helping Dake. People in our lives were amazing and so supportive. We could never thank them enough.

   We gained knowledge that the doctor doing the research was doing some questionable things and even causing some harm to these boys. We had gotten in about a third of our money and we decide soon after the deposit, it was no wise to go forward with Dake in the research. This was a very political situation between us and the doctor and his team. It was not a fun time and we were questioned repetitively as to "why?". A few months later this doctor was "run out" of the country.. Today he is in Malaysia working on boys with no government to protect them.

The two editions of Bake for Dake,,,,,

Dake around the time he was diagnose at age six.

Lyndsey at age 5 when Dake was diagnosed.

Dake and his service dog "Lurch" in high school.

"Lurch" was a rescue dog, part labrador retriever and great dane. He was train for 18 months before becoming a part of our every day lives. He was rescued when someone found him in a ditch after being shot. " Lurch" recovered and paid it forward... and rescue us. In Memory of" Lurch "in our lives from 1995-2002.

Picture of Lyndsey when the second edition of Bake for Dake and Lurch too! in high school.

So the first cookbook was done to help with money we lost because we pulled out of the research. But honestly we were just thankful money was all we lost because of the information were had heard. Dake was fine and that was all that mattered. The money was gone but we could slowly rebuild. The second cookbook came when Dake was in highschool and he had his service dog, "Lurch". The Family and Consumer Science teacher wanted her class to take on a new project. She ask me if they could take on the second edition and include treats for dogs. We agreed and Bake for Dake and Lurch Too! was born.

If anyone is interested in a copy of the second edition of
Bake for Dake and Lurch, Too!
we still have a few copies....all proceeds will go to expenses in Dake's traveling back and forth to Johns Hopkins in Baltimore, Maryland.
Each copy is $20.00 each
please add $3.00 for shipping if you need it shipped to you.

Thanks so much!

Dake and his new look! SEXY????

2011-06-23T16:52:00.000-07:00

There are disadvantages of having a little sister who has a little mischievousness in her. The disadvantages are further complicated especially if you can't move your arms.
Dake, Gracey and I were shopping this afternoon. Dake and Gracey were following behind me as I was concentrating on the item in hand. I heard Gracey just cracked up laughing out loud....Then I heard Dake say a firm but alittle desperate, "Gracey!" Gracey had tucked the bottom of Dake's t-shirt thru the neck of his shirt like a girl would do to show off her tummy and upper dept. When I turned around I got so tickled but did quickly get to his rescue.

A special thank you to Sandra Letson for her generous donation to help Dake and his research journey. We appreciate your kindness Sandra so much,

The Monthly Visit from Adiba!

2011-06-22T19:12:00.000-07:00

Each month Dake's social worker comes and makes sure all the services he has are going well and she makes sure his life suits his needs. This visits gets rather redundant but I am so thankful for the help we finally receive. It looked very doubtful that we would get any help after being turned down repeatively for home health thru Dake's Medicaid. Finally after much frustration, we went to fight for Dake's case in Montgomery in front of a panel of officials representing home health in the state. We pled our case and one look at Dake and we received appologies and immediate services. So it was definitely worth the trip. But back to today.....The social worker, Adiba, came again today and asked the same questions and we gave the same answers Dake signed off and off she went. There is so much red tape to constantly do to keep up these services.

I must admit I could not don't handle Dake by myself very easily or possibly at all anymore. My body was beginning to break down and hurt constantly. It started 1998, in eighth grade Dake weighed about 80 ish pounds. I would carry him everywhere that was not accessible and in tranferring him. He had a scooter but we did not have a van that was accessible. We were saving to purchase a van but at the time we were not there yet. The doctor said I need to stop carrying him so much because my heel bone was a wearing down the heel pad on the bottom of my foot. I continued until it became impossible.

I have shared with you that David turns Dake all the time, every night. At one time I was able to help David with Dake and we would take turns turning Dake. Around 2004, Dake grew and finally started to gain weight after a long battle of being extremely thin and having no appetite for most of his high school years. When he did begin to gain weight and grow taller is when it became harder and harder for me to turn him. He was getting taller, heavier and at this point lost any strength to help. I usually tell him he has bricks in his bum. I would go to turn him and lift him from a lying position and separate my shoulders or it would cause the disk in my neck to bulge or rupture. These incidents would happen on and off. I would not have surgery per my doctor's request because I did not have a time to heal before needing to lift him again. I would take anti inflammatory drugs and pain relief. Bless Dake because he would try his best not to have to flip unless he was absolutely hurting. Sometimes Phillip was able to help out until I recovered somewhat. Thanks a million times to Phillip for coming to our rescue. I had to have a bladder surgery a couple of years ago because the doctor said the way I picked Dake up I would have so much pressure on my abdomen I literally blew out part of my bladder. Since he is taller than I am I will lean him on my body and over extend my back backwards to pick him up from a sitting position. I tend to compress my spine because of this lifting this way too. Only problem with surgery was a six weeks of not lifting anything heavier than a milk carton. After getting to the point of no turning back my amazing family and Phillip once again helped me back to where I can help again. I still struggle with my shoulders and neck occasionally still if I lift him and pull wrong. David leaves the house at 4:20 a.m. and I will help him in the morning during the next three hours until home health gets here. And I lift him during the day when it is necessary. We have a hoyer lift but most of the time this lift does not meet his needs.
Please do not misunderstand me at all. I would not change anything about helping Dake other than make me stronger than an ox to be able to help him better. I am very thankful to be able to take care of Dake at home.

Prayer Bracelets

2011-06-20T16:03:00.000-07:00

Do not forget if you haven't gotten a "Heart of Dake" bracelet yet just let us know and we will get you as many as you need. Thanks to Tanya Griffin for her donation....(She would not want me to reveal that part but oops!) You can email, call or tell us in person and we can set you up. The bracelets are a reminder to pray for Dake as he goes through this research. As I have state before, I am not sure which way to pray. Whether he gets the drug or have him only get it in the sixth month phase. Selfishly on my part because I feel if he gets it during the sixth month time frame then we could see from the ones before him if there were any problems. This is kind of unfair because Dake has gone into it full force.(I need to be more like him.)

I do pray, however, whatever God wants that this is what happens. But I also ask God to help David, Lyndsey, Gracey and me deal whatever lies before us. I cannot do it without God helping me. I must admit I could not pray this for a long time. It was a prayer that did not happen over night or even after several nights. I realized that if I get my selfish way (and sometimes still have selfish times) that Dake was to be health and well but God's plan did not get fulfilled, I would have let Dake down as a mother and a christian. Kind of a serendipity thing, I guess. If I interfered with the course or plan for Dake and the people Dake has met in his journey never happens then nothing good could happen.
Now please do not get me wrong. I DO pray for Dake's healing but only if this is God's plan for him. Prayer has definitely been a journey for me personally. I remembered when we first got the diagnoses. I could not pray. I guess it was kind of like giving God the silent treatment but more I was in shock and the words would not and could not come. But because of the prayers of others I was able to speak to Him again. Because of this experience I realized that when a prayer request comes in from someone hurting never underestimate what your prayer may mean to that person. And never forget to pray for a request. It is easy to do especially if you do not know the person very well. You are sitting in church and you hear a request. You have good intentions but soon "life" starts to happen. You don't mean for it to happen but several days pass and you have forgot to have a one on one time with God and reply on the request for someone. We have all done it so......to help remember we have this bracelet for Dake to be a reminder to have a moment with God. Our family thanks you ahead of time for your moments you take on Dake's behave.

Happy 53d Anniversary to Dake's Grandparents!

2011-06-20T09:19:00.000-07:00

My Mom and Dad's Wedding Picture

Back row from left to right: Clarence Holman (dad's dad), Ruth Clark Holman (dad's mom) Joe Holman (dad), Mary Louise Johnson Holman (mom), Jewel Yearwood Johnson (mom's mom) Cloyce Johnson (mom's dad)
Front row from left to right: Jane Holman Simmons, (dad's sister), David Holman (dad's brother), Carolyn Johnson Harris (mom's sister) "Mama Wood" L.A Yearwood (Mom's grandmother)

Eccentricity!

2011-06-19T19:22:00.000-07:00

Made it back home and it is so good to be here....I had a marvelous time and meet some wonderful people..
Artist maybe eccentric but there is such diversity in this quirky population. This aspect of artists is what I love and definitely experienced this weekend along with some vast knowledge to apply in my own studio.

I talked to David and wished him a Happy Father's Day from the road. We talked awhile and it definitely helped time pass. He caught me up on the details of the weekend. David said Dake and Perry did not go to the movies last night but they did go to eat. He said Dake has not sleep well the last few nights and he thought it was catching up with him. He said they ate and watched T.V, for awhile. David and Gracey did go out to eat and then they went to the movie. They enjoyed both. Gracey enjoyed spending time with her daddy.

I got home in time to run over to my daddy's house for a quick hug ,visit and to wish him a Happy Father's Day in person. It was nice even if it was just for a few minutes. I am so fortunate to have him just across the street now.

David said Dake did not wake up feeling well this morning. David teaches Gracey's class so he told him he would let him sleep until Sunday School start but he really need to go teach. Dake still did not feel well and so David got him up and moving and then he and Gracey went to class.

I got in around sevenish and Dake still seems tired. Hopeful he will sleep better tonight.

David told me Jaimee Abernathy came by on Friday night and brought us a donation to help with Dake's travel. Thanks Jamiee we truly appreciate it and will be able to use it on the trip in July. I know you did not want public recognition but we wanted to thank you. Thanks for your support and kindness.

We are thankful to all of you who support us with encouraging words, donations, but especially with prayers. Without your prayers we wouldn't be able to make it out the door. Having God on our side has been shown to us over and over through all of your kindness and support. Thank you.

Last Night in Atlanta

2011-06-18T17:38:00.000-07:00

I chatted online with Dake last night. We have never communicated this way (with each other)....it was kinda fun.

After the workshop this afternoon I called home and got the answering machine. I heard Gracey's voice on the machine from when she was six.......awwwwww......it was so sweet....I hadn't heard it in forever.
   David called back soon. He said they were giving Dake a bath. I asked if he had a date? He said no, but he and Perry were going to the movies. David said he was taking Gracey to the movies too but they were see a different one from Perry and Dake. Gracey said they were seeing Mr. Popper's Penguins in the background. She was very excited to have a date with her Daddy.

    I had an amazing workshop day and have loved the whole experience. (I am definitely the little fish in the big pond. But I am so enjoying every minute.)  Tonight I texted an old friend I hadn't seen since my wedding.....29 years ago. We meet at Maggianos for a great meal and wonderful visit. Our dads owned and worked at a pharmacy together all of our lives... our parents still staying touch and keep us updated on each other. We caught up, ate and chatted for 2 hours. It was so great to see her and have a little time together. A very nice touch to end this amazing day.

I will have one more day to the workshop and then in the afternoon I will head home. Loved my time but ready to see that crazy family of mine.

All by Myself

2011-06-16T18:11:00.000-07:00

I am in Atlanta for an art workshop. It was a birthday present from January. I am so excited about learning new and wonderful things. I left today and Dake and Gracey headed across the street to their grandparents until David got home.

It is so unbelieveably quiet here..(I already miss them ...isn't that pitiful)..I just called home and told them I was here and in the hotel.

Next door to the hotel is a beyond amazing art store. It is like a 'Disney World' for artist. I only spent an hour and half in there this afternoon.

The workshop will start early tomorrow so the quietness won't seem so bad then.

I talked to Gracey tonight and she said Dake and she were making a habitat (I don't think I knew that word when I was 10.) for lightning bugs. She is going to use them as a night light tonight. She and Dake always have fun projects together.

David said Gracey fixed supper tonight. She fixed hotdogs. To build her confidence in cooking he ate FIVE! (she alt to feel pretty confident...ugh.)

New "Heart of Dake" Bracelets

2011-06-16T08:03:00.000-07:00

Last night Will, (our youth minister at church), ask us to speak to his teen class about out life. Dake was nervous and asked me several times that day, "What do they want me to say? My life is not that interesting." I replied with, 'I don't know but Willl will ask questions to make the conversation start going." His repetition starting making nervous....this of course ending on the way to church with a fussing match with nerves as the culprit. Dake knows how to push my buttons. At this point, I told him to go do it by himself. But when we arrived we all went in to the teen class smiling.

Isn't amazing how we can turn it off in a second when the setting changes. We use to tease my mother when she was fussing at us and the phone would ring and she would answer in the sweetest, "Hello?"

The class was full of teens, kids and a few adults which we appreciated especially the support. Will started the class off and then asked us some questions. I talked about the details and as the conversation flowed Dake slowly began to emerge. They were able to see Dake and his personality a little bit. The guys in my family tend not like to public speak so I talked the most....Gracey was quiet but she was not born during this time..Lyndsey would have shared if she were there. She remember details like me. Maybe it is a girl vs. boy thing I don't know.

Anyway the class was very nice and asked a few questions. Everyone listened as we told them the boring details of our lives. We appreciated the time to share. After class, Tanya Griffin had purchased "heart of Dake" bracelets and we handed out to everyone to wear....Thanks Tanya for your purchase and wonderful friendship. Thanks Will for the opportunity.

If you would like a bracelet let us know and we will get you one.

David's New Throne...

2011-06-15T15:38:00.000-07:00

We wanted to get David something he would really like for Father's Day. Since I could not afford to get him a 69 Chevelle I opted for this instead. I think he will like it. Gracey fixed him a card and a decorated "'T" to add to his bathroom museum. He will receive it early because I will be in late on Father's Day....We are so blessed to have him. We love you David...

David's Father's Day Present

Gracey's card and decorated "T". It says #1 Dad!

Dake and Lyndsey in 1992

2011-06-15T14:14:00.000-07:00

Dake is 8 years old wearing his Dad's UT jacket....Lyndsey is 7 wrapped up in her favorite sheet.

Sisters

2011-06-14T17:03:00.000-07:00

Siblings are often over looked during diagnose time and thru the course of the disease. Lyndsey was afraid to leave me. Part was to protect me and part was she was afraid something would happen to her. Lyndsey was my little red headed, high spirited child that was ready to conquer the world...To most she still displayed these amazing qualities but every now and then these little insecurities and fears would resurface and made life hard for her. After we got the Duchenne part of the diagnoses to the Muscular Dystrophy Lyndsey was going to have to give a sample of blood to check if she was a carrier of the disease. ( Females carry the gene for Dmd and males actually get the disease. More on this later.) I had given my sample of blood and it was Lyndsey's turn. They had a nurse and doctor try to get a sample and Lyndsey became hysteical fighting and screaming “No. No”. They added another nurse to the crew to help. They were still not able to hold her down. They asked me to help and calm her down. I tried to talk calmly and softly but she refused and shouted at her full lung capacity , “If you don’t take my BLOOD…. I want be SICK.” over and over again. (She thought Dake got sick because they took his blood so she did not want to be sick so she did not want them to take her blood.) I have to leave because it was tearing me up emotionally. The doctor puts her in a straight jacket and she gets out of it. After some long torturous minutes they somehow were able to get what they needed.

Lyndsey’s blood test came back telling us she is NOT a carrier. I am NOT a carrier either. This makes Dake's body the creator of his own disease. He is a sponteous mutation. This is extremely rare and unusual.

In third grade, (3 years after Dake’s diagnoses) she had a difficult time leaving me every day for school. Her teacher was so compassionate and worked with her to reassure her everything was fine. It was so difficult having to leave her every morning as she begged me to not go.

So she went into her classroom crying and I left in my car crying.

Gracey has never known Dake as a walker. She became a part of our family when he was 15 years old and already in the chair full time. Her perception will be so different from Lyndsey’s.

Lyndsey Goes Home

2011-06-13T19:59:00.000-07:00

Lyndsey flies back to Houston tonight. Tonight's goodbye was not as hard as the ones in the past. This is because in six weeks Lyndsey will be finished with her 3 year apprenticeship in culinary with top and master chefs at the Houston Country Club! She will be hopefully closer to home.....depending on her job of course, but she is hoping to be closer and so are we.

Wedding Pictures

2011-06-12T21:03:00.000-07:00

Gotta GO!...Gotta GO!

2011-06-12T20:42:00.000-07:00

         We started our journey back home after having an amazing time with family and sharing in the union of my nephew and new niece marry. Dake did an awesome job in the wedding after worrying he was going to mess it up somehow. I assured him even if he fell out of chair and rolled down the aisle my nephew and his bride would not care....they just wanted to get married!. LUCKILY, he did really well with no falling out of his chair or rolling . He just wanted it to be perfect for them. It was rather entertaining as the two flower girls did everything precious down the aisle. One of them was lounging back with her arms as she watched the ceremony while her sister ran to find momma. They were adorable. Their mom was not so sure but they were.
           As we traveled homeward, we needed to take a bathroom break after two hours into the trip. We stopped a rest stop in Georgia. Rest stops are a good place because the newer facilities sometimes have family restrooms. You know the restrooms with a single commode, with a changing table for diaper changing. There is usually extra room for a stroller or a wheelchair. Unfortunately, this particular one was older and did not have a family restroom. We load Dake back into the van and head down the interstate to look for a store or place with one of these restrooms. He tried not to think about needing to go as we rushed. On the way everyone in the van watched for billboards for a Target. Most Targets have family restrooms. We did not find one but did find a Barnes and Nobles. B and N in our local area has a single restroom and it would work great since I needed to accompany David and Dake into the restroom to help. We got in the store and found the restroom but it is not a single room. It is a several stall kind of restroom....but there was not any traffic at the time.
                 You know when you were a kid how you always wondered what the opposite sex's bathroom looked like.....even to the point of daring your friend to go peep or even push someone in as you walk by?  Well, I think I can say with confidence I have seen more men's restrooms than the average gal. (not something to brag about believe me.)
                  The routine is David goes in and checks if the coast is clear and signals for me to come in if it is. My mom stoods outside the door and waits just in case a male wants to enter while I am in there helping with Dake. (Bless her heart she did not know she would have to do guard duty on this trip but was a trooper nonetheless.) David picks Dake up and I quickly help with his pants. Get him situated and run out while David stays with Dake. (usually I carry a "temporarily Out Of Order" sign I made in case we do not have an extra person to watch the door. I also carry a door stop if it is just me so I can jamb it under the door after we enter to avoid embarrassment. Believe me I had to learn these tricks the hard way.....another story for another time. I did not have my supplies with me today.) Anyway back to this story. I relieved Mom of her post and waited for David to give me the signal when he was finished and needed help with his pants. I waited and one man entered. And waited and an another man entered. Then one man came out and I waited. I was starting to get a little concerned at this point. I had looked at all the books surrounding the entrance of the restroom. Trying my best to look non conspicuous as possible while I waited.   My thought was the math did not add up. There should be one more man in the restroom. David puts his finger over his mouth as to shush me and has Dake drive up as close to the outside door as possible. I glance in...(oh, you know you would have too!) fixing Dake's pants at the same time in warp speed. I see these MEN feet with pants bunched around them under the stall. I opened my eyes super wide as to tell David with my eyes, "I am going to kill YOU!" (He knew exactly what I said. After 29 years of marriage you have these subtleties down to a "T".)
In the van David explains they were finish 20 minutes before but this man. The guy remained in the stall and was smoking but would not leave. He did not know what else to do because they were honestly not wanting to stick around. I am still trying to forgive him. (lol) Soon the drama was over and we were on our way. I was hoping Dake did not get too thirsty on the way home.
Back Home safe and sound but mostly thankful for our blessings.

My Handsome Son

2011-06-12T05:59:00.001-07:00

The Dry Run....Rehersal Day June 10th

2011-06-11T06:23:00.000-07:00

Friday we went to get Dake's tux fitted. . Prior to Dake's fitting his great aunt who stands all of five foot one and cute as a bug made a deal with Dake. She teased and agreed to stand in for Dake if he really, really could not be in the wedding for whatever reason. Dake tucked her info in the back of his mind.
We entered the store and got his pre ordered tux. The nice lady instructed him to go try it on in the dressing room to the left. David and Dake moved in that direction and I asked if they need me...David with big eyes and a raised brow quickly answered, "Yes!" So we all three entered a small 3x3 closet. Inside this small square Dake has his chair and I am squished up against a wall on my tip toes, David is hovered over Dake but can not move an inch. We look like a bunch of clowns in a telephone booth. Now we actually have to move. Lyndsey is waiting patiently outside the door in a waitng area. If there were room she would have been ask to come in and help. In the meantime another customer comes in and goes in the neighboring closet to try on his tux. So David and I begin the process of the pulling and tugging of dressing and undressing. We get his pants on and they pull up slightly below his chin. I roll them three times to his waist, calming down with each roll. We are bumping and knocking the walls and echoing grunts of pain as Dake says, "I don't bend that way." We exit our cozy fitting room at the same time our neighbor makes his entrance wearing his new tux. He glances quick as we singly files out of our space. I see he has glanced our way and I smile and say, "You look really nice in your tux too and smile cordially." He acknowledged me with a nodded but gave me the strange look. We finished up and left. Lyndsey starts to tell us how neighbor must have perceived the noises coming from our side of the dressing rooms. The grunts and moans and comments could have been translated in a whole different light if you did not see us go in. The clerk even got tickled.
Dake looked so handsome in his tux but he said it was too much work and he thought he would just have Aunt Carolyn stand in for him. He was joking of course but funny at the time because David and I looked like we had been put in a washing machine on the spin cycle.
(P.S. The shoes fit....YAY!!!!)

Going To Savannah.....Wedding Time

2011-06-09T20:20:00.000-07:00

Today we are traveling to Savannah for my nephew's wedding. We left early because we picked Lyndsey up at the airport on our way in Birmingham. We waited last minute to wake up Dake to let him rest as long as possible. He was kinda grumpy because we rushed him and he does not like to rush. He slept most of the way to the airport. He said "Hi" to Lyndsey and then he was back to sleep. He wakes up occasionally to have us adjust his arms and/ or legs or for a drink of water. Sleeping on the way is best because he travels better this way and he will need all the extra rest he can get for the weekend.

Explaination of the Doctor's Visit

2011-06-09T20:16:00.000-07:00

We immediately tried to explain all we could to Dake and Lyndsey because they heard the initial diagnoses with us. We had so many unanswered questions ourselves. They saw the shock and the tears that accompanied with the announcement. Seeing your parents fall apart at 5 years old and 6 years old has got to be a set up for major insecurities and fears. We explained " Dake's muscles were sick and did not work like everybody else." We tried to reassure them as much as ourselves we were going to stick together and do whatever we wanted to do even if we had to do it differently. We told them we cried because we were sad and cried because we did not want either one of them to be sick. But we told them everything was going to be OK and not to worry (even though we were not sure ourselves). We told them we had lots of doctor's visits ahead of us and lots of questions to ask. If they had any questions just ask and if we did not know we would try to find out.

Our wide eyed babies absorbed every word of encouragement we tried to share. We all hugged and snuggled and we all slept together that night.

Remembering the Day We'll Never Forget...August 29, 1990

2011-06-08T10:59:00.000-07:00

    In early 1990, I remember thanking God for my family and the fact that they were healthy and happy. I tell you this to illustrate how deceiving Duchenne Muscular Dystrophy is. I knew Dake moved slower than his sister, who was 15 months younger, but honestly his personality was a more laid back kind of personality. His sister came out of the womb ready to conquer the world and conquering it by being the best. I definitely had two wonderful extremes to nourish and nurture.  Dake moved slower but not enough to worry something was horribly wrong.
    As a young boy, he had such a big heart and was so compassionate. He was quiet and only talked in public when he had too. (at home he was not quiet) He still laughs because when he was in kindergarten and got in trouble for talking, I was so excited he talked. We went to McDonald's to celebrate!

     At the end of his previous school year, the school had screened the children for scoliosis. Dake's report came back saying he had a slight 6% curve. I consulted a physical therapist friend that encouraged me to watch it but not to worry. I went to the library and read up on all the information related on subject.   Little did I know I was reading about my future. I came across a little blue box in the scoliosis section. It said "sometimes when children that are diagnosed with scoliosis and have large calves sometimes have Muscular Dystrophy." Dake had big beautiful calves.
   At that point my heart started pounding and I sat down in the middle of the aisle at the library. Muscular Dystrophy meant no more than the Jerry Lewis Telethon to me. I looked up muscular dystrophy in medical encyclopedia type book. It said that muscular dystrophy was a genetic and inherited disease. I closed the book and was able to take a breath and said, "Thank God", (out loud).... we did not have muscular dystrophy anywhere in my family or David's family. I returned to my feet and left and did not think about that little blue box again ........ at least for awhile.

      School started in 1990 and he went to the first day of school. He got up that morning with a cramp in his calf, in his leg. It was extremely tight (this had never happened before). I gave him some tylenol and rubbed it and was sure it would help thinking his day should be fine. Dake had beautiful legs and his calves looked so muscular. He was often asked if he biked all the time or if he played soccer all time with those muscular legs? (Another deception of this disease.)
     School concluded that day and much to my surprise Dake's calf was still hard and cramping. He did not complain too much but I know it had to hurt. I called the doctor and took him right in. Worrying, I asked the doctor about that little blue box. He assured me  I was over reacting. He said, "Dake was premature and because of that his muscles are slightly delayed but he was constantly catching up. But he is fine." (And he was right. He was continually getting stronger. Another deception of this disease.) But I asked him what would it involve to just check for M.D.? He said a blood test. I said please just run it and make me feel better. He did.
    It was August 29, 1990, the doctor called and ask if David and I would come in after the last appointment. My heart sank. I called David and his heart sank.
   We walked into the doctor's office of silence. It was not like it was when we usually visited. Our kids are with us. The doctor said he could not believe it. He even ran the test again in case of error but Dake had Muscular Dystrophy. He did not know what type just that he did have it and we were to go to Children's Hospital tomorrow and see the neurologist. The doctor cried with us. The kids did not know what was wrong. As we walked out, we were handed our bill for our visit....(what a final touch for a horrible day!)
   We had dinner plans with friends that evening. We were already late. On the way home, David began hitting the steering wheel repeating "NO, NO, NO! I tried to get him to pull over but he did not even hear me. I was trying to calm him down and the kids down. Honestly, I am surprised that the steering wheel wasn't bent. We made it home and our friends, volunteered to take the kids and give us a moment. I did not want them out of my sight. I just wanted to hug my family and never let them go. Lyndsey would not go but Dake did.  Lyndsey would not leave my side. At this point, Dake knew he was sick but he did not see what the big deal was because he felt fine. Dake honestly still carries this kind of attitude till this day.
    David and I knew we had to have answers right away because the doctor told us in from of him and Lyndsey.

More later, not easy to relieve some of this stuff so I am going to take a break.

Got the Next Reservations

2011-06-07T17:57:00.000-07:00

We got the reservations all set for the trip back to Baltimore on July 13th and 14th. I still have to set up the shuttle reservations. After the last experience, I am checking into other companies for shuttles. I will make those reservations after doing more homework. We are staying in a different hotel this time. We were able to find a package deal at a better price.

    We have new neighbors after being neighborless for about 2 years. The couple is from Hawaii and seem friendly. Dake went outside today and went over to say, "Hi". He enjoyed a few minutes of getting to know them.

    Trying to get the last minute details ready for our trip to Savannah. We are getting excited for Nathan's and Chelsea's wedding and being with our family. My brother has rented beach houses on Tybee Island for us all to be together.  My brother and my sister-in-law are always good about finding places for Dake to be accessible. We are going to take our portable ramps because we will have a few steps to conquer.
   Having a handicapped family member effects more than the immediate family it effects all family. We have been so blessed to have a wonderful family who tries to make extra efforts to make things comfortable for Dake and us. We are so thankful.

Daker

2011-06-07T17:31:00.000-07:00

Baby Birds

2011-06-07T17:25:00.000-07:00

Dake and Gracey found these baby birds in the back yard on Sunday.

Shoes for Dake

2011-06-06T19:23:00.000-07:00

         We went to find Dake a pair of black shoes. Actually, these shoes are back up shoes for the wedding. Dakes feet are really hard to fit. I am afraid the tuxedo company shoes will not fit him. His feet are extremely flat and wide.
   When he was in the fifth grade, Dake starting walked on his toes because his heel cords became so tight. We did physical therapy with him everyday sometimes more than once a day to prevent the tightening. The therapy really does not prevent the heel cords tightening but hopefully slows it down.
   At age 12, he had an operation to release his heel cords to help him walk again on his feet. Dake did great with the surgery and even with walking cast for six weeks. But when the casts came off he did not do like most boys after this surgery. Dake had extreme difficulty walking after this surgery. Dake said his legs felt like jello.
   David and I attended a Parent Project Conference for DMD in Pittsburgh, Philadelphia.(This conference were set up to hear researchers and doctors discuss research and obstacles in finding a cure for Duchenne.) I was fortunate to talk to a doctor from Beth-Israel Hospital. This orthopedist who did this procedure regularly on Duchenne boys. He explained that about 1 in 1,000 boys re-act like Dake. He said they do not know why, but that it does happen some. (In regrettable hind sight, we would have just left him walking on his toes instead of this alternative. But we were trying to do what we thought was best for him.) (Parenting is hard especially when you have a sick child.)
     Dake did continue to walk some with braces (but seldom without) and he was using a scooter on and off after this time. The scooter was becoming increasingly easier. We tried to prolong the use of the scooter as much as possible because once he stop using a muscle he would lose it forever....so we were trying to put off using the scooter constantly to keep his muscles working.
   We found a cheap pair of shoes that will fit but they are definitely only if we have to use them kinda shoes. It will be better than black socks.

Forgot to Tell Dake

2011-06-05T13:11:00.000-07:00

Seems I told everyone about the change of dates for Baltimore except Dake. lol. I need to work on my communication. Sorry Daker....of course it could have been his selective hearing....but we will not go there.

The art show is over and now I can breath. The numbers at the art show were low this year but made some great contacts and saw an old (not old in age but friend from years ago) friend and loved the place and managed to sale a few. David picked up Gracey from camp on Friday. He then brought her to the Factory in Franklin at the art show. She saw me from about 50 yards out and ran and jumped in my arms like she was 2 years old.....stuff like that just does your heart good. Priceless!

Now we are ready for Nathan's (my brother's son) wedding. He is getting married in Savannah this weekend. We are all so excited for him and Chelsea. She is adorable and I fell in love with her when I first met her when they were in high school. They both just graduated this year from college. Dake is going to be a groomsman. He is really excited and been planning his hair since Nathan asked him. We are all excited because we are going to see some family we have not been able to see in a long time.....especially my two niece. They are so very special and we have not seen them or visited with them in a while. We are planning on picking Lyndsey up on the way in Birmingham at the airport. We will have her just to ourselves a few hours and then we will share her when we get there. We will get in on Thursday and get Dake fitted for his tux.....this will be interesting to say the least....hopefully the measurements sent will be close....if not we will resort to the good ole' duct tape. (Has been used in the past. You have to be like a "Macguyver" of sorts

when it comes to living with the handicap.....but we "gitt'r done!) In high school, Dake and his date wore duct tape clothes to prom.... it took about 56 hours in all to complete the suit and gown....they were cute. Everything is duct tape, suit, shoes, his flowers and her flowers.....everything but the undies!

Dake's side is not hurting anymore...Yay!

Summer is already a whirlwind.....

Gracey took this picture of Dake today!

Change of Plans for Baltimore

2011-06-02T19:35:00.000-07:00

OK, we have a change of plans for going to Baltimore. At first, we were suppose to go June 20st and June 21st but we made a request to change it for a little later. We have had so much come at us at once we need a little recovery time. Luckily the research team was able to accommodate us and let us go later..New dates are July 13th and July 14th. This will allow us to kinda catch our breath physically and financially. Lots of time you do not have a choice if you are participating in a research study but we are thankful they were able to help us out.

Dake and my mom helped me set up for my art show in Franklin at "The Factory"....This is such an awesome place....kinda like an artist mall with cool places full of culinary temptations. And some businesses but art related like lawyers for the creative world.... so cool. I am in love.

Lyndsey did not hear anything today from her interview....so we continue to wait. She called but no one answered so she left a message. Maybe tomorrow! Keep your fingers crossed!

Gracey comes home tomorrow.....YAY! I am so excited!
David will pick her up from camp and the bring her to the art show. I am so disappointed I can not go with him to pick her up....it will be so hard to wait until she gets there...

Dake does not know if he wants to drive and ride for 3 1/2 to get Gracey (he has really missed Gracey, too but he may not admit it) and 3 1/2 hrs. back or stay at the art show with me. Decisions, decisions.....

Dake is still having pain in his side. He still refuses to go to the doctor but promises to go Monday, if he is not better. He even said it in front of his grandmother, so I have a witness in case he tries to back out of it on Monday.

Side By Side

2011-06-01T19:42:00.000-07:00

Dake's side is still giving him a little trouble. He refuses to go get it check out....He did bargain with me and said if he was still hurting Monday he would go. He believes it was from being lifted too hard or wrong. He is planning to go with me to set up for the art show....so hopefully he will not start hurting worse while we are away.

I am missing my little girl so much ....it is just ridiculous. David called me on his way home from work pretending he was her and acted like she was miserable.....it was totally NOT funny. And she has not even called me since my 3 o'clock in the morning on Monday....I feel so unneeded. Boo Hoo!
I hope she is having an amazing time....since I haven't heard from her I am assuming this is true....

Gracey is the "T" in Twisters..they we....Calvin and the chipmunks instead of Alvin and the chipmunks!

At FLIPFEST.

I holding my breath for Lyndsey who should hear tomorrow on her interview... wishing and praying the best for her..

Rubi is missing her girl too.

Dake Returns to Baltimore in June

2011-05-31T19:22:00.000-07:00

     Dake is feeling much better. He slept until 12:30 p.m. today. He is still having pain in his side but it is better too. I think that the side pain and the passing out were to seperate events. I did call the local cardiologist and they made a report of today's events and said to call if they happen again. At this point we do not know what caused today's episodes.

     When the dust settled and Dake was resting, the phone rang. It was the doctor from Johns Hopkins. They are ready for Dake to come and start the administration of the heart drug or placebo. The new dates to return to Baltimore is June 20th and June 21st. So we are in the act of starting all over again and get the preparations ready on this trip. The return trip came a little earlier than we anticipated but we are ready. Please pray for our return trip and to find the cause of today's events with Dake. I do not know rather I want to pray Dake gets the real drug or the placebo.....so God this one is for you! (after six months everyone will get the real drug)

I have an artshow I am trying to get ready for in between all these "episodes". It is this weekend at the Factory in Franklin, Tennessee. The show is called ARTFUSION and the dates are June 3rd and 4th. I am going into this show not completely prepared. The tornado relief and Dake's research slowed my efforts down quite a bit. But I would much rather be little less in the show because I praise God for the time spent this last month with the tornado victims and the opportunities that have opened up for Dake! Yay God! and Thank you!

Dake Gives Us A Scare

2011-05-31T09:16:00.000-07:00

This morning the home health ladies had come about 7 a.m.to give Dake his bath. They had him ready to turn the water on and Dake asked for me. One of the ladies came and got me and when I got there he tells me his side hurts and he does not feel good . (on the right side) I checked out his side and felt around to see if there is anything visible and check for anything abnormal. I must have hit the area. He says to stop and his face and lips turn completely white. His head is to heavy for him to hold up. He passes out for a few seconds and comes back and tries to assure me he is OK. We put a wet wash on his head and he keeps his eyes close. He is still having trouble keeping his head up. The home health helper goes and calls their company to send a nurse immediately..The nurses were all out. Then she calls the 911 and gets an ambulance to come. While waiting on the ambulance he continues to be white and he gets really nauseated and seems to shake a second or two. He comes back and says," I am fine don't call 911." I checked his pulse and checked his blood pressure. Blood pressure was normal and his pulse was low at 48. We get him out of the shower chair and get him back to bed and the paramedics arrive and check him. His blood pressure is normal and vitals at this time are stable and fine. He wanted to go to sleep. He seemed fatigued and worn out. He is still sleeping now. I called the cardiologist and they have noted it in his chart and said to call if it happens again.
I told the home health ladies he was like a kid who is sick until you get them to the doctor and then as soon as the doctor comes in the kid is just fine....They both said ,"Well we know something happened." Most of the time when he has an eposide the doctors will say we need to catch it when it happens. They both said they would be witnesses. Will keep you updated later.

Memorial Day 2011

2011-05-30T20:04:00.000-07:00

Today is the day of remembering and honoring those who have fought for our freedom. What a wonderful legacy to give your friends and family to know your efforts allowed this amazing thing we called freedom. In my own family I have so many to thank but also outside of my family...To all who have served and are serving now.....please accept my humble thank you.

David, Dake and I cooked out. We invited mom and dad over.
Dake had called another friend who was not home. We enjoyed a nice meal and conversation. I really enjoy having Mom and Dad in the same town. Most of our married life my Mom and Dad have lived 12 to 15 hours away. So the fact we can do these things now is the best.
Early this morning, 3:00 a.m. to be exact, we get a phone call. You know that phone call that wakes you up out of a dead sleep and your heart jumps to your throat. It rang once and I was up on my feet standing next the night stand. I could have just reached over but because of the shock of the ring I jumped up. It was silent and them this precious little voice says "momma?" My heart is pounding. She tells me her legs and arm are hurting and wants to know what to do. Knowing the only phones at camp are available about 300 yards from her cabin, I ask if she is by herself. (She is the child of mine that would have ventured out by herself to call me. She is a determined little girl. ) She said her counselor was with her.(SIGH) I told her she would have to go to the nurse because I had left the medicine with her. I asked her if she was OK....she replied in a matter a fact way, "yeah, momma!"
Later in the day I called the camp director to find out if she was OK. He said she was fine and went right to sleep after her medicine. I must admit. David and I did not go right back to sleep. Ugggh.

Dake said to me right before he went to bed last night, "Mom did you remember to take Gracey's medicine for her legs?" He was missing her too and trying to remember if we got everything she needed. (Gracey has leg pain when she over extends her joints. She has had problem with it since she was a baby but at least now she can verbalize it now. The doctor's thought she might have Juvenile Arthritis. But thankfully she tested negatively for it. Nonetheless, she does have pain often.)
Dake did say it was quite around the house today. He and Gracey has their routine of listening to music together or watching movies together. Gracey pops microwave popcorn and gets them some Kool Aid and pulls a stool up next to him and they watch a movie. He started this with her when she was small and now it is a regular tradition. Dake will watch usually what she wants and enjoys these moments with her. She does definitely know how to push his buttons and vice versa but they do have some really sweet moments too.

First Over Night Camp

2011-05-29T21:22:00.000-07:00

We just got home from taking Gracey to her first over night gymnastic camp. She is three and a half hours away.

She was so excited.

David and I just drove her up there and dumped her out and simply drove away. Well, maybe not quite. We drove her up there and got her settled and hung around for 3 1/2 hours ...then David took me dragging and screaming.....Well, close but not exactly.....It was hard to leave her but she was happy and excited. So that is good. Right? She is happy,.... now RUN, RUN fast....RUN and don't look back...."Remember Lot's Wife!"
I was actually doing pretty well until today at church they announced that everyone would be moving to their new class. (they will move to the grade they would be in starting in the fall...she would move to the fifth grade classroom) I asked her where her new class would be and she said "upstairs", I said "Upstairs! Only the old people (David and I go upstairs) and old kids go upstairs...." Then she said ,matter of fact like, "yeah!" I might have made it but that just pushed me over the edge.
Nonetheless I did leave her at camp and did manage to drive away...

.Letting go is not my favorite part of mothering! David said, "Maybe she could just stay a month?" He acts tough but I know better...He got in a second kiss and hug before he left.

Phillip Comes to Visit

2011-05-28T20:11:00.000-07:00

Phillip has come to spend the weekend with Dake. Phillip lived with us for three years. He wantted to spend more time with Dake. Dake and Phillip have been friends since they were both six. They meet soon after Dake was diagnosed. We moved two doors down from them after Dake was diagnosed because we needed a pool. The best therapy for a Duchenne Muscular Dystrophy boy is swimming .Swimming and being in the water takes the weight off the muscles. (An interesting tidbit: Boys with Duchenne Muscular Dystrophy tend to float more then the average child. So we had to weigh him down with aqua weights to keep him from floating.) So when they actually stop walking they can revisit the experience in the water. We moved into the house down from Phillip and his family and connected with their family for a lifetime. Rita, Phillip's mother, was a lifesaver for me during this difficult time and while we were trying to adjust to the diagnoses. Philip's brother, Evan and Lyndsey are the same age. The four of them were inseparable for years. If they were not together at our house, they were at Rita's house. The bond between the four of them last strong today. Theycontinue to be important friends in each other lives even with distance between them. Their friendship is a beautiful thing to watch.

Ok, I am suppose to post something mean about Dake today because he kept picking on me today and I told him if he did not stop I would post something embarrassing. Ok, here it is .....sometimes during the day when he gets sleepy Dake likes to go to the garage and take a nap in the warmth of the garage.....like a cat. .....meow Dake....

Visit from the Social Worker

2011-05-27T16:32:00.000-07:00

Today Dake's social worker came for her monthly visit. She comes to check if the home health groups are doing their jobs to his liking and if there is any changes that need to be made. We actually have two home health groups. Two ladies come with each group. When we first started to try to get help through the state with Medicaid and we were turned down repetitively. It was very frustrating and physically exhausting for David and me. Dake, Phillip, Gracey and myself went to Montgomery and fought the state and finally won.

When I am by myself I lift Dake to use the commode but the problem comes in when trying to lift him and pull his pants up at the same time. When he was a senior in high school he stopped being able to put weight on his legs. So from then on we were working with dead weight. In high school, he barely weighed 100 lbs. and we were constantly trying to entice his appetite. He was on a cancer drug for appetite for about 3 years.....then after 3 years and stopping the drug the weight came....he added about 75 lbs to his already 100 lbs and new problems arose. Home Health was insistant they were only sending one person. I said, "It cannot be done. This is why were were asking for help in the first place....I cannot do it alone." They assured me they were professionals and could do it. After about two tries home health understood what I had been trying to say and started implementing two workers. The social worker set us up with two different groups because to bathe Dake and get him ready in the morning is extremely physical and stress on the body even with hoyer lift and shower chair. The two groups have been a good idea and I am thankful the social worker thought of it at the beginning.

For the times, I am by myself and he needs to visit his friend "John", I will call my mother who lives across the street to come help me. Or, if Gracey is here she can help. Poor Dake he has to schedule an appointment just to visit "John". My mother has been so wonderful to plan her schedule and live around our needs. She has been a saving grace for us.

When Dake was in high school he had fallen out of his chair while in class. He was in driver's education with a bunch of football players. Lyndsey had walked by going to her next class and saw where he had fallen out of his chair. The football players had worked and stuggled to try to get him back in his chair with no luck. Lyndsey, still in conversation with a friend just stopped picked him up and plopped him back in his chair and left still talking to her friend. The football guys just stood there with their mouths open in awe. It was great!